I get some relief from the alpha blockers, but they all cause the intolerable side effect of severe muscle cramping, which I also believe may be working counter to a long-term cure through physical therapy, etc. The latest was Flomax, which worked for a while for me at high doses without side effects, but the muscle cramping recently kicked in. I have had to lower the dosage and now am having frequent urination problems.
No medical health professionals in my area have any clue about this condition. My primary care physician is willing to work with me, but she's basically looking for me to tell her what to try.
I have read here and elsewhere that some people have had luck with Elavil, but there seem to be wide ranges of dosage that people are taking (from 5 mg to 75 mg). I take it that it is best to start as low as possible and give it a few weeks to kick in before titrating up or giving up, but what is the minimum therapeutic dose? Also, what are the chances that Elavil's antihistamine properties will make the frequent urination problem worse rather than better?
Lowest theraputic dose of Elavil?
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Jay
- Retired Mod
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Re: Lowest theraputic dose of Elavil?
5mg is the lowest dose I've commonly heard used here on the boards. I started out at 25mg and, although I had to go off of it, I'd personally suggest titration from the bottom. This approach is also good in that it'll allow you to develop a tolerance for some of the side effects, such as drowsiness.
Regarding your concern about the drug making frequency worse, that's doubtful. Elavil is often used to treat urinary incontinence. Actually, the fact that it gave me retention issues (I had no urinary symptoms other than burning) is part of why I didn't last on it, so it may help you!
Regarding your concern about the drug making frequency worse, that's doubtful. Elavil is often used to treat urinary incontinence. Actually, the fact that it gave me retention issues (I had no urinary symptoms other than burning) is part of why I didn't last on it, so it may help you!
I am not a physician. This is not medical advice. Consult your doctor!
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.
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.
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NYanchuk
- Beginner
- Posts: 37
- Joined: Sun Dec 06, 2009 2:06 am
- Location: Vancouver BC Canada
Re: Lowest theraputic dose of Elavil?
Right now I'm slowly dropping my dosage of Elavil... started at 25mg 2 months ago. After I began taking it, in a couple weeks it dropped my average agony from 6/10 to 3/10. It also got rid of any random outbursts of extreme pain. At the one month point though, I started experiencing really bad night terrors/ataxia and random headaches; one weekend my whole right arm went numb and ice cold for the whole day. It was after that that I started looking into the side effects. Night terrors, and loss of ability to move were in the RARE section... . Numbness of limbs isn't listed, but I found someone else (only 1 though... ) that had this happen to them. I started taking 3/4 a pill a couple weeks ago, went down to half last week, and am just started to take a 1/4. Today I'm pretty much back at the level of pain I was at before I started the Elavil. I'd say from personal experience, start at 10mg... . I wasn't having the night terrors, and I wasn't back at the original level of pain. I'm going to try going off it completely though, due to my apparent extreme sensitivity to the side effects. I would like to be able to sleep with the light off again... . .
For the record, I have never had a night terror ever until I started taking this drug...
For the record, I have never had a night terror ever until I started taking this drug...
Age: 26 - | Onset Age: 23 - | Symptoms: painful urination, painful ejaculation, cold penis, chronic pain through perenial area and penis esp. at tip of penis, penis desensitization, general pelvic discomfort and pain, dribbling, shooting pains up to abs, VERY easy loss of erection - | Worsened By: cold, sexual activity, alcohol, stress/stressful/strenuous activity, heavy lifting, concentrated urine, marajuana, hiking downhill, running - No Effect: stretching, acupuncture, mindfullness, relaxation, meditation, a blockers (alfuzosin, tamsulosin), antibiotics, painkiller, muscle relaxents, valerian root, quercetin (3 months...tried twice), low oxylate diet, herbal tinctures - Currently Trying: Lyrica 450mg/day + Tegretol 600mg/day. Seems to help a little, but the withdrawal + possibilities of worse pain make it scary to go off...
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NYanchuk
- Beginner
- Posts: 37
- Joined: Sun Dec 06, 2009 2:06 am
- Location: Vancouver BC Canada
Re: Lowest theraputic dose of Elavil?
Hmm... last night I had more night terrors, and only a ¼ of a 25mg... AND I hurt A LOT this morning... . . I wonder if they are connected... . ?
Age: 26 - | Onset Age: 23 - | Symptoms: painful urination, painful ejaculation, cold penis, chronic pain through perenial area and penis esp. at tip of penis, penis desensitization, general pelvic discomfort and pain, dribbling, shooting pains up to abs, VERY easy loss of erection - | Worsened By: cold, sexual activity, alcohol, stress/stressful/strenuous activity, heavy lifting, concentrated urine, marajuana, hiking downhill, running - No Effect: stretching, acupuncture, mindfullness, relaxation, meditation, a blockers (alfuzosin, tamsulosin), antibiotics, painkiller, muscle relaxents, valerian root, quercetin (3 months...tried twice), low oxylate diet, herbal tinctures - Currently Trying: Lyrica 450mg/day + Tegretol 600mg/day. Seems to help a little, but the withdrawal + possibilities of worse pain make it scary to go off...