Health Organization for Pudendal Education

Hi all,

I have had a very bad couple of weeks in which my burning has been very intense, especially late in the evening. I have been icing (plastic bag of ice with wet paper towel around it) around the clock for the final 8-10 hours of my day and sometimes longer. So, I’m trying to figure out why it’s getting worse. My routines have not changed, but I did reduce my amitriptyline dose a few weeks ago---from 100 to 75 mg a night. I reduced it because I just feel so foggy in the morning, and I sleep a lot (sometimes 9 hours a night). So, I wanted to experiment and see if I could get away with less. But, I’m wondering if this reduction is the cause. So, I wondered what doses are others using?

April

April,
I can only tell you I think the 25 mg change could be pretty significant given my experience (although not the same as yours). I take amitriptylene to keep away shooting nerve pain in my big toes. When I got PNE they tried to double my dose to 50 mg and the side effects (blurred vision) were too much so for the PNE we went on to Gabapentin.
Janet

That's very interesting. So a 25 mg increase in your dose significantly increased your side effects---and blurred vision no less. That must have been scary. So, maybe my 25 mg reduction is the cause of my recent uptick in burning. I did scale back gradually by cutting pills in half. And, I actually tried to do it several times and always went back to the full 100 when I had a flare. But this time I stayed with the reduction plan even with flares. Anyway, many thanks for sharing your experiences. How do you think the gabapentin is working?

April

April,
The gabapentin did some help but I ended up after PNE surgery switching eventually to Lyrica and Fentenyl patch. Then the acupuncturist found a way to get rid of my constant rectal pain so I could stop those two and I now use tramadol or oxycodone at night depending on whether it is just PN or my foot pain, or both. I also use the painkillers for flares if needed during the day or tramadol if I will be doing extra sitting in the car or flying, etc. Most of my PN pain is rectal and sometimes muscle spasms felt vaginally but no burning. I hope you can find the right combination to help you.
Janet

I see. So, you have been through a lot with pne. That's great that the acupuncturist was such a help with the rectal pain. My pain seems to be exclusively along the perineal branch, so I've not had rectal pain. I'm going to ask the doctor about lyrica and gabapentin if the flares continue. Today was good, though, so I'm keeping my fingers crossed. Thanks for your feedback.

April

Although it seems I been through a lot, I know I have been very lucky. Acupuncture has worked out way beyond what I could have imagined. You just never know what can help. I hope you find something to help you, soon!
Janet