Health Organization for Pudendal Education

I still haven't got the prescription, it hadn't arrived at the chemist yet. I expect they'll have to order the topiramte, so with a bit of luck I'll be starting this on Tuesday or Wednesday.

I think you are quite right about the pregabalin having less side effects than gabapentin, that was my experience at least.

Hi calluna

Ivd been taking pregabalin for 7 months and I have not really had any side effects. It has definitely helped with the burning. I started taking cymbalta duloxetine and I had a massive allergic reaction to it felt really ill. I take nortriptyline with pregabalin and they seem to work okay together. I haven't gained any weight I have lost weight from it. Hope you get your prescription sorted soon xx

Hi Calluna,
I hope you get your prescriptions soon. Just for future reference, taking 300mg of Lyrica and 90mg of Cymbalta daily changed my life. This time last year I was in such sever pain that I could not sit for my law school classes, and this year I sat through the bar exam. (18 hours of sitting in 3-4 hour segments over 3 days) I don't have many side effects except maybe some slight memory issues and occasional drowsiness. I tried nortriptyline before these meds and also up to 3000mg of Neurontin, which did nothing for my pain. I'm having hip surgery soon, which I hope will resolve most of my issues, but I have gone from thinking about PN 24/7 to almost forgetting I have pelvic pain.

Good luck!

Jackie

Thankyou Jackie and Kate. Once again, it is interesting how our experiences vary.

I've got my tablets today and will be starting them this evening - 25 mg of topiramate and 50mg of pregabalin. Instructions are to take the dose up at weekly intervals until I get enough pain relief, topiramate not to go higher than 100mg and pregabalin can go up to 300mg. I am still quite apprehensive about the possible side effects of the topiramate, but there is only one way to find out how it will work for me.

I do appreciate everyone's input, very much.

Jackie, congratulations on sitting for the bar exams!

Glad to hear these drugs are helping you and good luck on your upcoming surgery.

Violet

Thanks Violet! It was pretty amazing to be able to sit for that long. I hope the hip surgery helps too.

Jackie - I just wanted to say that your words about 'almost forgetting that I have pelvic pain' have been in my thoughts ever since I read them here. How wonderful - I mean, really. Your words have given me such hope. And I do hope that your hip surgery helps as well - do you have much longer to wait?

I'm now up to 50mg topiramate and 150mg of pregabalin today, and I must say that the combination does seem to be very helpful although I am still getting breakthrough pain and certainly can not forget about it - yet. At the moment I do feel a bit spaced out though and I would not want to attempt driving - I'd expect that to settle down over the next few days. I have high hopes for this. I have not noticed any alteration to my weight, by the way.

Just two weeks in on this new regime and I can hardly believe the difference, and also I can hardly believe how fast the change has been. Before, I was struggling to the extent that I was on crutches, the pain was knife-like and I literally did not know what to do with myself - at times even oxycodone was barely touching the pain. Today I have been walking around all day (ok, I have just had a nap this afternoon) but I have not even needed a stick. Indeed, so far today I have had barely more than a twinge or two of pain - I literally cannot remember when I last had a day as good as this.

Right now, I dare not quite believe it.

Currently I am taking just 150mg of pregabalin and 50mg of topiramate each day - that's 75mg of pregabalin and 25mg of topiramate, morning and evening. Dr Greenslade did say that it was a very effective combination and it seems (as usual) that he is right.

The pain is now minimal. I would rate it as discomfort rather than pain, and it seems to be getting less every day. I have been at this dose now since Friday last week, so that's only 5 days. I am going to hold at this dose for a while and see how things go.

Side effects - some tiredness and sleepiness, I was sleeping in the afternoon every day at first - out solidly for a good two hours if not more. And I am still feeling quite tired, but this seems to be wearing off. I felt rather spaced out after each dose increase - almost separated from myself, as if distanced, quite an odd feeling - this happened each time I took the medication, and the effect lasted for a few days each time the dose was increased. I did not feel safe to drive during this time.

What else - my husband tells me that my moods have been a little odd on occasions, although I have not been aware of this myself at the time, but he tells me that this also seems to be passing. This worried me terribly, when he told me this, and if anything stops me taking the topiramate, it would be this. I don't want to turn into an aggressive person. I would like to be able to say, and soon, that this particular side effect has gone.

Finally I am having problems with cold, numb hands and fingers, and with tingling in my hands and fingers as well. I gather it is called paraesthesia. This is more than a little bothersome, but a price that I don't mind paying to be relieved of the awful pain.

Oh - and I have neither gained nor lost any weight at all.

This does sound encouraging Calluna . I can imagine many would furrow a brow at least, about the hand and finger paraesthesia but it just shows how much you have been through to be content to put up with this side effect. I do hope that this calms down to zero and the sleepiness abates even more.
Take care,
helen

Well, I am certainly awake at the moment, and my hands have behaved themselves all morning - so far, at least. I am hoping these side effects will wear off over the coming weeks, as side effects often do.

And, hmmm - tingling right now, as I type. Darn. Never mind! NO pain! I'm just taking this a day at a time.