Saw my physio today and he has suggested either pregabalin or gabapentin to help with high tone and nerve painand stiffness in my affected side.
Anuone have any experience of these and whether there are any pitebtisl side effects to look out for.
Thanks in advance for any responses.
Cheers and a Happy and Healthy 2023 to you all and your loved ones
Thanks @Loshy im not sure of dose yet seeing my consultant on 18th so will learn more then. Im also waiting for a heart monitor (loop wire?) To be fitted as they havent ruled out AF as a potential of causing my stroke.
Thanks and hope to see you on one of bobbis zoom meets soon xx
Hi @TRFCANDY53 
I take pregabalin three times a day. Haven’t had any side effects 2 years in so hope you find a result!
Reassuring words…
Uve had a 5 day monitor and the bubble test which showed nothing - im grateful they are carrying on investigating …
The care and attentionn here is really brilliant. Im lucky in the sense of where i live and the stroke support and expertise.
Another thing im very grateful for
You are amazing the way you keep bouncing back Lorraine - a real inspiration which i mean sincerely xx.
You are auch a caring selfless giving person that sonetimes you need to make sure you let others help you as much as you need.
We are all in this journey at different places but all wanting the same result…
Hopefully see you on Mondays zog call
Much love from me; Julie, Matthew and Harry xxx
Look forwardcto seeing you on Monday xx.
Andy
I was prescribed pregabalin years ago and still take one every night. The doctor said they are a general medicine that helps with anxiety and pains but I have been on them for a long time and I think they are a bit addictive. They help to relax me so I will continue to take them. Norma Jean.
Many thanks Norma Jean, thsts really helpful and much appreciated . X
Take good care
I have given pregablin what I think is a decent go but didn’t get a massive benefit from it so switching over to gabapentin. There are formal studies on people who have done the opposite.
Apparently it is very common, although they are similar, for one to produce better results for you than the another. The pharmacist who is helping me went through a list of 5 possibles and so I’m one down out of 5 as I found the higher doses of pregablin difficult.
It does look like it’s a case of trial and error. The idea seems to be to find that sweet spot dose wise of minimum side effects to maximum benefits.
There are some serious lag times between starting to take these and full benefit, 4 to 6 weeks, definitely not a quick fix.
You are very welcome sorry I couldnt be more help. Norma Jean
Thamks Nigel. Very insightful and informative. Will discuss further with my medics when i see them.
Cheers
Andy
Thats a great help thanks
Just to add, I was for pregablin, on 150mg morning, 75mg lunch and 75mg evening. I found that even if I took the evening dose up a little to 100mg, that was too much. Felt a bit like a zombie and remote.
I didn’t feel there was a definite benefit to higher dose but … I am today now back on 75-75-75 with 25mg decreases with the aim to get to 50-50-50 over 3 days before I drop it completely and move to gabapentin.
I feel more achy and stiff today and it’s easy to assume the drop of medicine is the reason but …
I also found that I never settled even on the higher dose. On Xmas Eve I could walk really quite quickly and was even able to do a decent slow jog over 30-40 metres.
For the next 5 days, walking was hard work,even short distances but the sensations were also in the arm, hand and face so not just the legs. then another day when I could walk quickly. Any given day tended to feel better at 5pm than 10am.
Sometimes there is the thought of “done too much” but I don’t think this is often the case for me. The neuropathic pain seems to come and go in waves and it’s easy to associate a bad day with x event. I don’t think any link is reliable.
This makes it hard to draw any definite conclusions,even coming off the medicine, I can’t be sure the achy feeling now is 100% linked. This is frustrating as how to make decent decisions when there is this variation.
The only thing I am sure of is stress makes me feel much worse. The rest defies logic for now
Hope this helps
Thanks Nigel…
Really great to read about your walking and jogging too!!!
Very impressed.
Im thinking the medics need to explain this clearly to me…
@TRFCANDY53 I have nerve pain on the left side of my face, I was first given gabapentin but it didn’t work at all for me, I then went onto pregabalin, it worked although it did take quite a while to find the correct dose and times to take it, over time I have had to get the dose increased as the nerve pain came back. I’m now on 200mg three times a day which takes me to the maximum dose so I hope it continues to work, as a bonus I found it helps with my anxiety. When I first started it I slept a lot, now the only side affect I get is a bit of a dry mouth. Hope you find one of them helps you.
As of today my pregablin dose is zero,first time since april/may I think and my first gabapentin 100mg is tonight. Likely I will have some pregablin in my system for a little while.
As a summary,pain gradually getting worse, not great currently but some odd events which don’t fit neatly with medicine reduction
What I have noticed neuropathic pain wise on this reduction journey
There are some unexpected items which logically don’t tie in with medicine reduction
The link mentions the difference between pregabalin/gabapentin and amitriptyline and what type of pain they are good for.
I haven’t seen this stated anywhere else. Assuming this is accurate I wonder looking back if I was put on pregablin initially almost as a matter of course.
My journey so far has been Pregabalin to gabapentin to now amitriptyline. I have had a few breathing issues of late (not covid) hence ending up with amitriptyline but as they have not fully gone away, not sure that was down to the medication. Who could chance it though. it’s too early for me time+dose wise to see what difference amitriptyline will bring. It’s not come with the dopey and tired side effects of the other two tho.
Hiya
Im on Pregablin. 200mg a day. I take it 50mg x 4 times a day. I get a little confused about what is classed as Neurological pain. I dont have pain but just a stiff foot and leg. Toes feel they have an elastic band around them and leg the same total tightness in muscle but its not painful although i do get pins and needles a little bit in arm and hand again not painful. Im not sure the pregablin helps that much to be honest. Total numbness down legnand foot. Wondering would gabapentin work better.
Hope everyone is ok. X