Sorry I haven't responded in a while but I was giving the neurontin some time before I reported back. I agree with mike o. Seemed to help but didn't eliminate. I got through 4 nights without incident and then the effects wore off. Those were 4 consecutive nights last week while I was on vacation (no workouts either) and the symptoms came back once I got back to work and started working out too. I've come off the meds without withdrawal and continue to stretch my piriformis and use the acupressure mat every night. This week I've only been up 2-3 times per night, which is an improvement for me. The neurologist referred me to a pain management doctor. He said they may be able to narrow the problem down by beginning to numb certain pelvic nerves. Im avoiding any and all pelvic procedures until July. I'm taking my wife to Mexico mid June for our 10th anniversary so I'd like to retain sensation below my belt, if you get my drift.
MJ from NJ
MJ from NJ
Did anyone go through a dramatic event in their life prior to this happening such as the death of someone or a recent divorce? I did. After such event all of this began to happen.
Santiago
Santiago
Also, has anyone had a history of kidney problems? Or seen blood in their urine?
Santiago
Santiago
I've posted here from time to time. I was an early advocate of Baclofen and Clonazapam and took part in Eugenes questionaire (never heard from him again).
Anyway, here's something to think about.
I have Crohn's Disease which is an auto-immune problem. Anyhow, because of various surgeries and a great deal of pain, I found myself taking a host of pills over the years, particularly pain medications.
Now, when SRPE struck me around 4 years ago I considered whether it could have been one of my medications (or a combination) that had brought it on. So I stopped taking them one by one.
I stopped taking every medication except one, and that, dear readers, was slow release (SR) 100mg Tramadol.
I clung to Tramadol because I had formed quite an addiction to it. But a recent hospital admission forced me to cease taking this painkiller for the first time in 6 years.
And over three days my SRPE almost completely disappeared. I say almost, beacause I still wake once or twice a night to urinate. But the SRPE is gone 10 days now!!
I'm not prepared to draw any absolute conclusions yet, because these are early days. However, I'm guessing I reached a certain toxicity with this drug or it has a long-term impact of a kind that brings on SRPE. Therefore, SRPE may be drug/medication related for some people. I also know that Tramadol is unusual as a painkiller because it has an anti-depressant component in it.
I'll post again in a few weeks.
You can call me Dizzie.
Anyway, here's something to think about.
I have Crohn's Disease which is an auto-immune problem. Anyhow, because of various surgeries and a great deal of pain, I found myself taking a host of pills over the years, particularly pain medications.
Now, when SRPE struck me around 4 years ago I considered whether it could have been one of my medications (or a combination) that had brought it on. So I stopped taking them one by one.
I stopped taking every medication except one, and that, dear readers, was slow release (SR) 100mg Tramadol.
I clung to Tramadol because I had formed quite an addiction to it. But a recent hospital admission forced me to cease taking this painkiller for the first time in 6 years.
And over three days my SRPE almost completely disappeared. I say almost, beacause I still wake once or twice a night to urinate. But the SRPE is gone 10 days now!!
I'm not prepared to draw any absolute conclusions yet, because these are early days. However, I'm guessing I reached a certain toxicity with this drug or it has a long-term impact of a kind that brings on SRPE. Therefore, SRPE may be drug/medication related for some people. I also know that Tramadol is unusual as a painkiller because it has an anti-depressant component in it.
I'll post again in a few weeks.
You can call me Dizzie.
Hi Dizzie -
This is Eugene. I still read this site quite regularly. I am still waiting to receive more questionnaires. I have about 10 right now. Please if anyone wishes to contribute please write to me at _[removed]_ and I will send you the questionnaire.
This site has given me permission to post this address to collect answers to a questionnaire regarding this little known condition.
(To site monitors-please look back several pages where this address was posted before).
My condition has gone through phases. On most nights I only get the problem onece or twice only in the early morning when I seem to dream. More recently it seems to have been maybe three times. I quickly urinate and go back to bed. That is the best way I can deal with the situation, and I have come to accept it.... not fight it, which seems to help. I used to be so anxious about what's wrong with me. I totally stopped any medication like baclofen I was using once upon a time. It lost its effectiveness.
I will continue to collect questionnaires and reach out to a researcher to publish the answers. I do not think there will be a quick fix unfortunately.
Hi Eugene, Dizzy here. The absence of SRPE after I ceased Tramadol (SR) lasted about three weeks, then I returned to 3-4 episodes a night. Which is a major bummer because I really thought I'd tracked down the culprit (painkiller toxicity), and thought it was over.
There are many anecdotes on this site, of things working for a short period and then ceasing to be effective. Drugs like Balcolfen and Clonazepam initially work, but then over time lose their effectiveness. I wonder how SRPE achieves this override?
Are any of you experiencing foamy urine? Mine is very cloudy and foamy. Perhaps this has a lot to do with it? Would like to know if any of you are experiencing this...
Santiago
Santiago
Santiago, I never experienced any kidney problems, or foam in the urine. And I cannot pinpoint any traumatic event prior to onset. It appeared out of nowhere about three years ago. If you are experiencing those other conditions, they may be entirely independent of SRPE and you definitely should have them assessed by a medical doctor.
SRPE has certainly been a mystery. The intensity and number of events at night also seem quite random. They fluctuate. I kept notes for about a month and a half. It goes from around 5 events a night to 1 or even none. But none is rare.
If all of us kept a calendar by our bed, like I did, and write down at night everytime this happens, we might be able to see how random this is. It is a pain to have to write things down when you really want to get back to sleep. But it might be useful information.
I might start taking calendar notes again for a month or so.
Eugene
SRPE has certainly been a mystery. The intensity and number of events at night also seem quite random. They fluctuate. I kept notes for about a month and a half. It goes from around 5 events a night to 1 or even none. But none is rare.
If all of us kept a calendar by our bed, like I did, and write down at night everytime this happens, we might be able to see how random this is. It is a pain to have to write things down when you really want to get back to sleep. But it might be useful information.
I might start taking calendar notes again for a month or so.
Eugene
I agree with the randomness. For me I've been trying to get back into exercise and that's when it seems like it increases in frequency. Weird. Perhaps we can log times awake and anything different that day. Caffeine also seems to impact me. More caffeine = more awake time. John
Eugene,
I have not had any history of kidney problems either. I currently have a primary care provider and two urologists working in my case. All three of them have conducted a series of tests and concluded that nothing is wrong with me. In fact, my PCP even stated that I was the healthiest person inside that building. They evaluated the foam and said it is nothing abnormal. Also, the reason I ask about the traumatic event is because I went through one prior to this. I was very anxious of losing a girlfriend I had just got. Moreover, My anxiety was very elevated during the time we broke up which was 3 months after we met. After such anxiety alterations, i began to see blood in my urine (not a lot) and about a month later, these unwanted erections began to show up during the night. They aren't painful till this date. I have been with this problem for a year and a couple of months. Doctors have proscribed duloxetine because they think it's due to anxiety. I am starting to think it is due to anxiety. My reasons are as follows: (1) I have tried taking warm baths before going to bed and I don't wake up during the middle of the night. (2) I have tried deep breathing during the day and that also helps me sleep and not wake up whatsoever and (3) I tend to get mini panic attacks during the day. Therefore, it would make sense to conclude it is due to an elevation of anxiety. However, to have it for as long as a year? Or even more is quite absurd. There must be some trauma done in the hypothalamus region or something of that nature. I'm sure it is reversible but we need to talk individually and conduct a series of hypothesis and tests (being that our doctors have no reasonable answer for us). What makes my case unique from the rest of you is that I have never tried any drugs or medications prior to this and my erections aren't painful at night. However, they are up all night and it is damaging sensation on my penis, which gets me even more anxious!!! Hope I helped...
Santiago
I have not had any history of kidney problems either. I currently have a primary care provider and two urologists working in my case. All three of them have conducted a series of tests and concluded that nothing is wrong with me. In fact, my PCP even stated that I was the healthiest person inside that building. They evaluated the foam and said it is nothing abnormal. Also, the reason I ask about the traumatic event is because I went through one prior to this. I was very anxious of losing a girlfriend I had just got. Moreover, My anxiety was very elevated during the time we broke up which was 3 months after we met. After such anxiety alterations, i began to see blood in my urine (not a lot) and about a month later, these unwanted erections began to show up during the night. They aren't painful till this date. I have been with this problem for a year and a couple of months. Doctors have proscribed duloxetine because they think it's due to anxiety. I am starting to think it is due to anxiety. My reasons are as follows: (1) I have tried taking warm baths before going to bed and I don't wake up during the middle of the night. (2) I have tried deep breathing during the day and that also helps me sleep and not wake up whatsoever and (3) I tend to get mini panic attacks during the day. Therefore, it would make sense to conclude it is due to an elevation of anxiety. However, to have it for as long as a year? Or even more is quite absurd. There must be some trauma done in the hypothalamus region or something of that nature. I'm sure it is reversible but we need to talk individually and conduct a series of hypothesis and tests (being that our doctors have no reasonable answer for us). What makes my case unique from the rest of you is that I have never tried any drugs or medications prior to this and my erections aren't painful at night. However, they are up all night and it is damaging sensation on my penis, which gets me even more anxious!!! Hope I helped...
Santiago
Time for me to check in again. I have dealt with this 10-15 years., although to a lesser extent, most of my adult life. I am 58. The only diagnosis I have had is nocturia (active nighttime kidney). I have never tried medication and at this point I am pretty unwilling to take meds for it. My experience is like Eugene's. I try not to fight it. I get up, urinate, and do my best to go back to sleep. I am usually successful, except in the morning. I can rarely sleep in. The number of times of night seems completely random, but the mean would be 2-3 times. I encourage everyone to fill out Eugene's questionnaire.
TG from MN
TG from MN
I have this issues since three years ago and i used to wake up 3-4 times per night, i am reading this posting since then, I see people posting here with no improvement what so ever, even after maney years they still wake up couple of times in the middle of night, and it was really disappointing and made me very worried.
I have some better news, since 4 months ago, I less think about it during the day and I accepted it as part of my life and forced myself to relax , so my situation has been improved, I only wake up one time and it is at the end my sleep (around 6 am); I still have back pain but at least not waking up in the middle of night , I hope you guys get some improvement also.If you have some good news, please share.
thanks
Mike
I have some better news, since 4 months ago, I less think about it during the day and I accepted it as part of my life and forced myself to relax , so my situation has been improved, I only wake up one time and it is at the end my sleep (around 6 am); I still have back pain but at least not waking up in the middle of night , I hope you guys get some improvement also.If you have some good news, please share.
thanks
Mike
Mike,
According to your response, the less you think about it the more you relax. The more you relax, the less frequencies. I am completely in accord with you. This tells me it's an anxiety thing.
Santiago
According to your response, the less you think about it the more you relax. The more you relax, the less frequencies. I am completely in accord with you. This tells me it's an anxiety thing.
Santiago
I have the same problem and have narrowed it down to a supplement called Arginine. Also I think caffeine acts in some way. Take a close look at any supplements you are taking it can be hidden in some pre-workout or creatine powders.
What lead you to conclude that it is due to supplementing on Arginine?