Health Organization for Pudendal Education

Hi everyone

It's been a while since I last posted, but thought it was time for an update, especially as things have changed in the last couple of months.

Having had decompression surgery in October 2011, I've taken 60mg of duloxetine (Cymbalta) per day since then to help manage any pain and give the nerve chance to recover from the surgery. Haven't really enjoyed taking the duloxetine - whilst the side effects haven't been anywhere near as bad as others on the forum have described, the impact on cognitive function hasn't been great (akin to having an ice pack on my brain) so I always saw this as being a price worth paying whilst recovering from surgery and getting life back to normal, or as normal as it ever can be.

I saw Dr Greenslade in Bristol in August, and I asked that I should stop taking duloxetine, which I managed to do by the end of September with no/little side effects - other than my brain feeling normal for the first time in two years! About a month after doing so however, the pain levels started to increase - although this did coincide with the weather in the UK starting to get colder. Keeping warm seems to help mitigate the pain levels, but they remain at levels higher than I've had post surgery.

My GP has now written to Dr Greenslade and he's come up with a couple of options. Firstly, use other drugs in the Tricyclic series - Lofepromine (70mg at night) or Noritryptyline (10 to 30mg at night). I'd see these as being last resorts, as I simply don't cope well with the impact on cognitive function - I get the feeling that at some point it would become a choice between the pills and working, and I don't want to be put in a position where I have to make such a decision, especially as there's no time limit on how long I'd have to take them - I know Dr Greenslade has used the phrase 'lifestyle drugs' with others on the forum, and don't really want to go there unless absolutely necessary.

The second option is something I don't think I've seen referred to on here before - use of a Capsaicin patch (8%). I'm advised that because of its content (chillies) it has to be applied by nursing staff (hospital) to the painful area and tends to result in lots of sweating and nausea for the patient? I'm also told there's a topical cream, albeit at a much lower dosage than the patches. I've decided to try the patch, but does anyone have any experience of having one of these applied, and whether it offered any pain relief? I'll report back once I've had the treatment (awaiting appointment at present).

Andrew

Andrew, I haven't tried a capsaicin patch but I used a capsaicin topical ointment called soothenol for neuropathic itch. It was quite effective in allowing me to get to sleep but it caused painful burning when first applied. As the burning went away there was a window of time without any burning or itching that I could get to sleep. What type of pain do you have? If it's already burning I can see why this would be a pretty intense treatment.

Violet

Hi Violet

I definitely wouldn't describe my pain as 'burning', nor do I have any issues sleeping, I don't know how you can cope with pain levels like that, I'm terrible after one night of disturbed sleep. I'm hoping to find something that means I avoid having to be on pills for an indefinite period, possibly permanently.

My pain is constant when sat down, even with a special cushion, so having to manage that carefully - likewise trying to keep warm seems to keep the pain levels under control. Sadly the British climate doesn't make that easy, and I don't think I'm coping very well with the pain levels at present, so I'm willing to try non-drug options that will provide some help, however transitory.

Just looked up the patches (Qutenza) on netdoctor.co.uk - didn't tell me much more than Dr Greenslade mentioned, but does appear that it can take up to 14 days for there to be some effect. Let's see what happens...

Andrew

Andrew, WebMD gives a brief description of how capsaicin works.

http://www.webmd.com/pain-management/tc ... c-overview

"Capsaicin works by first stimulating and then decreasing the intensity of pain signals in the body. Although pain may at first increase, it usually decreases after the first use. Capsaicin stimulates the release of a compound believed to be involved in communicating pain between the nerves in the spinal cord and other parts of the body."

Seems like it's worth a try at least. There is a caution if you have high BP and also the warning of a possible allergic reaction. Good luck with it. I will be interested to hear how it works for you.

Violet

Hi

A little while since I've posted on the forum, so a bit of an update.

I had a caspacin/Qutenza patch applied in early May - a little uncomfortable, but not quite as hot on the skin as I thought it might be, in fact the worst bits were driving home (wouldn't recommend driving unless you only have a short journey home, as I did) and not being able to shower for 48 hours.

In terms of pain improvement, I'd say that was negligible, but pain levels are generally much better for me in warmer weather anyway. So we're going to try two more - one in November, and one next February, when the UK weather will be at its worst. So we'll see whether the patches bring any improvement when it's cold.

So think it's going to be a case of managing my environment to keep the pain levels manageable in the meantime - fortunately the UK weather is pretty good at the moment, so pain level is at the lower end of my usual levels of between 4 and 7 (out of 10).

Andrew

Andrew,

Glad to hear you are noticing some improvement. I looked up some info on how this procedure is done. Thought it might be interesting for anyone who doesn't know. http://www.rxlist.com/qutenza-drug/indi ... dosage.htm

Violet