Stubborn trigger points (Ramana's Case)

Male pelvic pain, prostatitis, IC
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webslave
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Re: Levosulpiride

Post by webslave »

No idea, but here's a possible clue:
On the face of it, Levosulpiride should increase pain, but maybe I am missing something ...

However, it does help with burning mouth syndrome, so maybe it activates D2 receptors in some people, and not blocks.
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Re: Levosulpiride

Post by webslave »

It's also interesting to view the meaning of somatoform disorder, the condition for which sulpiride / levosulpiride (and the parent drug amisulpride) are used.

Here's a good study:
http://pubmed.ncbi.nlm.nih.gov/11064841
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Re: Levosulpiride

Post by ramana »

This medication is still helping though the improvements is increasingly less. It has made sitting for several hours now possible with the aid of a cushion.
I still wonder if someone can give investigate/ give a more detailed explanation (webslave's is good but still does not explain everything)/suggest similar but more effective options.
I did not believe that a pil can solve the issues but with this incidence, I am not ruling that out now.
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
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Re: Levosulpiride

Post by ramana »

My pain has reduced by 70% now after being on levosulpiride. My pain management doctor believes that the reason that I did not get much relief from PT is because I have had a neurological issue. Psychiatric drugs also act on peripheral nervous system and that is possibly the mechanism of action of this drug. Nevertheless I still got the remaining 30% to get through and not really sure what to do. Possible suggested courses of action to me are a) superior hypogastric block and b) Spinal implant. PT has been ruled out because of no help from May 2008 onwards.It did appear to help earlier but the pain reduction may as well have been over the course of time
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
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Re: Levosulpiride

Post by carld »

ramana wrote: I still got the remaining 30% to get through and not really sure what to do. Possible suggested courses of action to me are a) superior hypogastric block and b) Spinal implant.
Not sure if this is what you are referring to...

http://etherweb.bwh.harvard.edu/pmc/pad ... erior.html

http://www.spine-health.com/video/spina ... lant-video

Way out of my league here...but this seems like a radical approach...Your case my warrant this...but only your doctor can really help you decide something invasive like these two options.

Glad you got 70% relief, this is a good start for you.

Good luck...
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
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Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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Re: Levosulpiride

Post by ramana »

Yes carl - you are right on the money. That is what the doc suggested. The nerve block is not very radical. The spinal cord stimulator is. I hope I won't need that. SP had minimal effect for me. I am still doing the meditation part. Levosulpiride helped dramatically and the assessment is that the pain is due to a neurological disorder. My experience with docs says no one knows anything and I gotta try things one by one while continuing to avoid anxiety and stress.
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
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Re: Levosulpiride

Post by carld »

After reading many of your posts over the years and seeing how hard you have worked to try and heal through Stanford and so forth...I think you may be on to something here for your particular case Ramana...As you said, one thing at a time.

Be well... :smile:
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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Effects of CPPS with Prednisone

Post by ramana »

I have been on levosulpiride [admin note: levosulpiride is an antipsychotic drug] since March 2009 and that has decreased chronic prostatitis / chronic pelvic pain syndrome symptoms a lot. Since June 2009, I have had inflamed thyroid that was diagnosed as sub acute thyroiditis. Ultrasound showed a poorly defined mass on the right side. TSH was slightly less. T3 etc was normal. I was put on prednisone 40mg for the first 3 days , 30 mg for next 3, 20 mg for next 3 and 10 mg for the last 3. I took the 12 day course 3 times.
I was told that sub acute thyroiditis would disappear by itself. But 8 weeks later I still have the same symptoms as soon as I am off prednisone. Now doc has prescribed prednisone for a full month with dosage ranging from 40 to 10 mg for a week instead of 3 days as earlier.

My questions are
a) Does long term usage of prednisone affect chronic prostatitis / chronic pelvic pain syndrome symptoms
b) Any connection between thyroid and CPPS
c) Any way that I can find any studies of long term use of levosulpiride ? I can't find any such studies through Google. Are there any other databases that one can search through library (I have access to Stanford medical library but not sure what to search)
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
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Re: Effects of CPPS with Prednisone

Post by webslave »

ramana wrote:My questions are
a) Does long term usage of prednisone affect chronic prostatitis / chronic pelvic pain syndrome symptoms
b) Any connection between thyroid and CPPS
c) Any way that I can find any studies of long term use of levosulpiride ? I can't find any such studies through google. Are there any other databases that one can search through library (I have access to Stanford medical library but not sure what to search)
  1. Yes, it can, see https://ucpps.men
  2. Not that we know of
  3. Use the Pubmed database
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Re: Stubborn trigger points (Ramana's Case)

Post by ramana »

I finally got out of the thyroiditis after 3.5 months and restarted levosulpiride. Great relief after 5 days. Today is bad because I sat for > 30 minutes and the pain came back but otherwise good relief that hasn't been possible from anything that I have tried (and that includes lidocaine injections/ lidocaine ointment/host of medications/PT/Stanford etc). I thought I would just provide an update in case someone wants to try this (not available in US/UK - only in Italy Korea and India)
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
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Re: Stubborn trigger points (Ramana's Case)

Post by ramana »

I tried Belladonna and opium suppositories http://www.rxlist.com/belladonna-and-opium-drug.htm.
I am surprised that it failed to help. Given it has got narcotic and I did receive help from vicodin, it should have helped. On the other hand, since it did not help does it mean that the source of pain is probably not in the rectal muscles (where it acts the most) OR the medicine was not absorbed. Will appreciate inputs.
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
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Re: Stubborn trigger points (Ramana's Case)

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2 weeks ago you said the levosulpiride was giving great relief. I take it that did not last?
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Re: Stubborn trigger points (Ramana's Case)

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Yes levosulpiride is giving me relief. But then there are days when I have to go and do some driving/sitting in a waiting room and that increases the pain. I was hoping to use belladonna and opium suppositories to use that to calm down. In any case, I can't continue levosulpiride for years because no one knows about side effects.

I am still searching for any reason on why B&O did not help at all because that may give some clue on the nature of the pain
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
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Re: Stubborn trigger points (Ramana's Case)

Post by webslave »

Insufficient dose delivery, is my guess. Have you tried a Fentanyl patch?
fentanyl.jpg
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Re: Stubborn trigger points (Ramana's Case)

Post by Jay »

I would also consider asking your doctor about a Fentanyl patch. With the level of chronic pain you suffer, it seems to me (as a layman) that it'd be a reasonable option.

You have to build up tolerance to other narcotics before you can use Fentanyl, I believe, because it is so potent. Definitely not something to play around with, but it does help many people with very bad, chronic pain.
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Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.