Health Organization for Pudendal Education

Ok, 19 days on this regime so far.

I'm currently taking 225mg pregabalin (3 x 75 caps) and 50mg topiramate (2 x 25mg). Today I have had hardly any pain at all - just a little perineal discomfort when I have had a full bladder. I increased to this dose on Friday and plan to stay at this dose - or rather, at 200mg, because I want to even out the dose across the day.. I hope the small reduction won't make any difference.

Side effects - minimal now. The episodes of aggression from the topiramate have gone. I'm not having any more problems with sleepiness or tiredness. There were some episodes of mental, hmm, difficulty. I couldn't do mental arithmetic, just couldn't do it. That's now back to normal. I have had quite a bit of paraesthesia in my hands - coldness, numbness, tingling. This was from the topiramate and was quite a problem, I am glad that it is now disappearing - almost completely gone now. Since the last increase in pregabalin I do have some issues with constipation, but that's an old problem and I know how to sort that out.

It all seems a bit too good to be true. Can it really be this easy? There has to be a catch. Doesn't there?

I think I will want to wait six months before I say, this is it. But I think that in a month's time I shall be posting in the success stories, if this keeps up. Because, honestly I feel as if I have my life back. I am still keeping with all my lifestyle restrictions - I'm wondering if I need to?

So happy for you Calluna.
So you are not taking any duloxetine? for the anti seizure, anti depressant combo. That's interesting and so wonderful that this regime is helping so well. I almost don't want to add words of caution because this is just such good news but I know you won't do anything silly to jepardise this fantastic improvement, so no kicking your height quite yet
Great stuff.

I am so delighted for you that your new drug regime is having such a positive effect. You must feel like a new person with the feeling that you have got your life back again after so much pain. It lifts my spirits reading about your progess out of pain.
Wishing you lots more happy days.

Hello Helen and Geraldine

No, not taking any duloxetine. This is a combination of two different anti-convulsants. Dr G did tell me (and my GP) that this particular combination would be a very powerful one and it seems he was right. My weight is unchanged.

I still feel as if I am going to wake up and discover that this was all a dream, it is so unbelievable to have no pain at all. So far today, not one single twinge. I am sitting (yes!) around with a daft smile on my face all the time. You know, one of things mentioned in the incredibly long list of side effects for the topiramate was topiramate was euphoria. I can see that one...

Still using cushions etc and being careful - except yesterday evening I forget and sat on a hard surface (a little table actually) for about half an hour whilst chatting. Then I realised and got up immediately. No pain.

My other half is saying dire things about remembering that these things all have long term side effects but right now I just don't want to know about that.

All sounds wonderful, got to say, long term side effects or not. My husband would always be a dissenter from the sidelines too. I always initially think he should be more 'on my side,' but then I know he is just has a different (man) way and is concerned, rather that simply 'putting the mockers on' anything.
Since we got our puppy I have definitely been in more pain and as I can't get away with 'reclining' quite so much, I have decided to address the anti seizure drug thing again. I was rubbish with pregabalin but I am prepared to try it again and then go to gabapentin if it really is unsuitable second time around. I'm sure I wasn't being a total wuss before but it may be worth another go as many people do so well with this particular drug.
Now that my nerve conduction tests have come back so positively dreadful they may take me more seriously at the surgery now??
Long may this new you continue Calluna, although I rather liked the old one too
Take care,
Helen

I think I am the same person? Eeek personality changes.... I hope not...

I found it harder to titrate the pregabalin upwards the first time I tried it. But there were a lot of other stressful things going on then, my mother was very ill in hospital,, I was living out of a suitcase in my sister's tiny spare room and going to and from the hospital every day on the train... all very difficult. It does make a difference.

One thing I would say is whatever you choose, to step up the dose slowly, ie small amounts. if you get side effects that are hard to cope, then step back down again, wait til it all settles, and ask for a smaller dose to step up with. Do not step up at intervals closer than a week. And do not step up at all until the side effects from the last dose increase have gone away. This was all from my lovely GP by the way, such a nice man.

But this time it has all been much easier and faster, because no stressful stuff going on in the background, I am sure.

Do you know, I almost feel guilty, because this is working so well for me. And so many others here, including you, are still in such pain, and I do know what it is like, and how it rules your life.

I do hope they take you more seriously at the surgery. It is high time.

Hope you are having fun with the puppy! Now that's a life-changer. A pup is always hard work and I can see that you would be in more pain. Very adorable (especially when you can hand them back to their owner) - and completely and totally worthwhile in the long run of course - but oh my goodness they don't cut you any slack at all. What sort of dog is he/she, and how old now?

She is a cockerpoo and just over 3 months old now. Yes a life changer but ready for it as couldn't get any more stagnant unless I became a pond dweller!
She is a dream really and love, love, loves her Mam to distraction All of the 'not getting on the sofa or bed' is totally out of the window of course. Unfortunately I found that I have an allergy to her, itchy eyes, slightly restricted throat and headaches but everything except the throat weirdness has gone now.
Off to puppy classes tonight, Oh!! just realised I have just taken my first pregabalin!! IDIOT! Hope I feel OK to drive, Hmmm, ok so far. Will try some online scrabble and see if my brain still works

Ooh pregabalin! How much are you taking? You'll be fine, I'm sure.

And a cockapoo, they can be so sweet! We've got a cocker girl, blue roan with tan. People keep thinking she's a Cavvy.

Yesterday evening, not so good. We had an unexpected guest for lunch and I rather overdid things. I did not pay attention to my sitting restrictions and although I had no pain at the time, my goodness I paid for it later.

So now I know - the current level of meds is sufficient to completely remove the 'normal' background pain, but not enough to cope with any pain spike that would ensue if I do not stick to my lifestyle changes.

I almost didn't want to look at your new post as I was so happy about the 'new you' with 'no pain'. At least you know you still need to be careful but I hope the dinners after effects haven't lasted too long, or calm soon.
Got to say that I like pregabalin!!! Last time I took it I was still having an awful time coming off gabapentin. I really hated it but had titrated right up and found with drawl very long and very strange. I also think that I was taking my last pill (pregabalin) too late in the evening, allowing me to sleeeeeep and not in my usual contrived positions. Unfortunately this meant that I was waking with muscle pains, and as morning are my best time (as per) I decided I couldn't hack it and stopped..
This drug is so much easier on me than gabapentin now that I have changed the timings. I smashed so many things, dropping them (not all of them my own ) and could not think of words with gabapentin but I am winning most of my on line scrabble games on pregabalin Maybe my opponents are on gabapentin??
It will be interesting when I ask for a repeat prescription as I had such a hard time having it prescribed and then only used it for a couple of weeks. I won't feel the least bit guilty about the cost!
Would you be able to take any tramadol or similar as and when needed Calluna, if you do overdo things?
Take care
Helen