Neuropathic pain treated with dosulepin

Jon Miles, UK - jon@coccyx.org

Posted 2018-09-30

Note - I run the coccyx.org website. See my previous history here.

In 2015, 16 years after my coccygectomy, I was 90% better than before the operation, but still had some neuropathic pain which limited me in some ways. Prolonged pressure on my lower back (top of the pelvis) caused a strange tingling pain in that area. A pain clinic suggested pregabalin (Lyrica). I tried that for a couple of months, and found no improvement, but I had very unpleasant side-effects.

I weaned myself off the drug over a couple of weeks, and found to my distress that I had much more pain than before, set off by sitting, or even by lying on my side. This continued for months. Now I really needed treatment.

A friend who is a physiotherapist recommended a pain specialist who I saw privately at Oxford. He tried me on Duloxetine (Cymbalta), but it left me exhausted, so he suggested a low dose of a tri-cyclic anti-depressive, lofepramine, but it made peeing painful and difficult, a known possible side-effect. So I changed to 50 mg/day dosulepin, another tri-cyclic anti-depressive. This gradually reduced my pain over about 6 months, back to the position I was in before trying pregabalin.

A particularly interesting point that the specialist made to me was: you need to be on this type of drug for two years; the first year to fully establish the pain relief, and the second to make it permanent.

For the past eight months I have been taking 50 mg/day of dosulepin, and I am happy to say that I am back to the position I was in before trying pregabalin. Not perfect, but again 90% better than before my operation.

Another thing that I found helped me a lot with the neuropathic pain was a TENS machine. I put one pad on each buttock, just below where the coccyx was, and I kept it switched on all the time that I was sitting. This greatly reduced the after-effects of sitting. I also used it at other times if I had some pain. I no longer need it now, except maybe if I am driving on a long journey

Update, 2025-03-23

I took the pain specialist's advice, and at the end of the second year I reduced the dose in small steps over 6 months, pausing the reduction if the pain started to come back. I cut the pills up to make the smaller doses.

The end result is that I am pain-free. I get a bit of discomfort if I spend many hours sitting, but it soon goes away. If I expect to sit for a long time I take a cushion with me, 5 cm thickness of medium density foam rubber, covered with knitted cotton cloth.