Pregabalin

[Orangesandlemons77]

Hi not sure this is really the right place but couldn't find anywhere else.

I'm reducing Pregabalin which I have been prescribed for Post shingles pain.

Quickly was increased up to the highest dose 4 X 150mg a day. It really helped with the pain (which is quite nasty, in the nerves on the side of my face, also from other episodes on my right side in general)

I'm also prescribed 30/100 Co-codomol for a previous painful condition (adhesions post surgery) and I am on 40mg Fluoxetine daily for depression.

It's quite a lot to manage and the higher dose of Pregabalin was making me like a zombie- just sleeping all the time and unable to function.

So with the support of the GP I am reducing to 75mg 4 X a day with 150mg in the evening as one dose. I have only been on this high dose weeks which is why doing quite a big drop. (previously was 75mg which was helping with pain but not eliminating it)

So my focus the next couple of weeks is dealing with the side effects and also increased nerve pain.

Alongside DC doing A levels and a younger one Y9 revision and exams.

I have this new app thing called Curable I plan to try and use to help me with the pain. I am going to try walking and maybe swimming.

It is nearly 11 am and approx 3 hrs since I took the new reduced dose. I have taken some Co-codomol today X 2 to try and help me the first day.

I have had some coffee and a hot water bottle to help the pain which can be in my back and side as well. Feeling OK so far but a bit shaky.

Pain is more noticeable but not terrible so far.

Best wishes to anyone cutting down meds today for whatever reason.

Gosh - that's quick - I was on similar dose of co-codamol and pregabalin for fibro/EDS and various disc/nerve migraine things. I reduced by 25mg at a time, was a bit of a mare for the GP to work out what dosages of tabs to prescribe but I genuinely didn't notice the reduction at all - is there a reason you're doing it so fast? When I tried like that I had the worst rebound pain and ended up on patches, so really would advocate for slow and steady. I too was zombified, between that and menopause thought I was going to lose my job. It's all gone now I'm off.

I was also referred to a chronic pain support group that's like curable I think, an dit's made th emost massive difference. As has my realising that much of my pain was exacerbated by not doing much physically - the more I do (as in normal day to day activities, not exactly taking up marathon running) the less sore I am - partly as being active and moving helps and mainly as feeling happy/doing things I love takes time away from thinking about how sore I am).

Best of luck, always happy to chat if you need it

Thanks for the reply GayPareee I actually requested if was possible to reduce to the previous dose and I think because it was a short time frame it was allowed, I was really struggling to function. Another thing we were interested to see was has the shingles pain improved- I just had it in February.

If it is really awful I can always ring them and maybe get some 50mg ones to add to the 75s and go from there, I suppose. I will see how the next couple of days go. I feel quite determined though.

I am 46 and also going through menopause / peri, it is a lot all at once. I am glad to hear you are better now. It's quite scary how zombified pregabalin can make you feel.

At least with Co-codomol it doesn't make me feel zombified - just put in another request for 100 so will go and pick that up later.

A bit concerned may get dependant on that if I take it instead of the pregabalin all the time but I hope it will be OK. At times I have had to stop it before it has been OK (apart from an increase in pain)

I used to find that too with the activity prior to this episode, did swimming and yoga for example but just not had the energy lately. Hopefully might be able to get back to that.

Well it is 12noon and time for next Pregabalin, feeling OK still quite shaky not not missing the extreme zombie like state. Pain not that bad either so far, but did take the Co-codomol not long ago. It's not supposed to be helpful with nerve pain but it seems to help me.

Day 2. So it seems to be going OK feel slightly jittery but less than yesterday, took the higher dose overnight so slept fairly well and didn't wake up in pain, however as the day goes on am noticing quite an increase in my pain levels in the areas I had shingles.

Trying to relax and do some pain management things as getting stressy and tense won't help with pain.

I am noticing feeling less zombified and tired though although still quite tired (also have low iron so being treated for that)

Might try and go for a walk later. It seems to be a Pharmacist dealing with the dose changes at the GPs so can leave a message in the prescription request section online for some 25mg to add to the 75mg perhaps

It's more tricky to see a GP but have managed to book a phone appt for the first week in June to say how it is going then. Wonder if maybe 100mg might be better than 75mg longer term.

Oh well, that is the end of that for the time being. Took a 150mg capsule yesterday evening, as I had planned as GPs said OK to take a higher dose at night as been waking in pain (or take an extra one in the night)

Anyway the pain went, it had got worse again and it would have been hard to sleep otherwise.

So, I have at least found out if the pain is still there. I remember in the past they said something about spacing out doses to reduce, so I might try that (e.g. 2 X 150mg during the day instead of 3) so reduce side effects, then I will speak to the GP but that is not till mid June (first routine appt I would get)

I'm sorry that I don't have any helpful insight into this situation at all (but DS (21) takes a high dose of pregabalin so I am reading with that in my mind).
My only tiny suggestion is, because you said you used a hot water bottle for your back pain, was to try a heated blanket. I have all sorts of pain - arthritis/ tendinitis bla bla bla and i love my heated blanket because I can wrap it right around my back, up my neck, wrap it all around my entire shoulder, my sides, not just try and wedge it flat in one spot. The heat is so comforting. And you don't have to keep refilling it.

Thanks for your message and idea x

I really would push for a much more gradual reduction, but am surprised you take it so often, it's normally only twice a day (was on 300mg twice a day). I would try changing two doses to 125mg and leave the other two at 150mg, then after a week (at least 4/5 days) step then down so you're on 125 x 4 etc.

I was on 300mg twice a day and reduced by 25mg each dose, so only 50mg total per day per week. Doing it hard and fast caused massive rebound pain.

My GP is also a trained acupuncturist so put me into a tens machine, less than £30 off Amazon but really does help take the edge off too.

Best of luck

Thanks, yes again the frequency was from when I had 75mg, and it was wearing off between doses. They increased the dosage but the frequency stayed the same on my prescription.

I don't think things have been helped as they tend to have a pharmacist or nurse call me back and they can be in a bit of a rush.

Thanks for the ideas, I will try and speak to the GP who originally prescribed it when I finally get the appt. and see what he suggests as well.

So now you are off the meds do you have a lot of pain now?

I have tried a Tens machine in labour and it didn't really help me with the pain.

For my abdominal adhesions, prior to the shingles I used to do quite a lot of yoga and swimming which helped, but this Neuropathic pain seems a bit of a different beast.

I still have some pain but have learnt mindfulnes etc to 'tune it out' for want of a better word, and just try and be more active in my everyday life which also helps. I have neuropathic pain too due to a compressed nerve in my neck and this is less successful, I too didn't find TENS too useful in labour but it can help with this, mainly cos there are so many sensations going on that it helps confuse the brain. TENS is meant to be particularly good for this type of pain.

I've done an 8 week pain management course via a neighbouring NHS trust, I was incredibly lucky to be accepted on it and was hounding the GPs for years for it, finally a hospital Dr was able to refer me. It's made a massive difference to my perception of pain and my ability to live with it and do things, and I think the Curable works on a similar principle. Have you given it a go yet?

I have listened to some of the intro things but have got the suscription now so will try some more of it

Also have the Calm app and been doing a 7 days of exercises for pain on there which seems quite helpful

Thanks for the tips x