I’d agree with your wife not just to go cold turkey and to speak to your GP.
The drug itself can take a good few weeks to work.
Hope whatever you decide helps, I know that getting used to drugs can be a nightmare.
Hi Colin
I have decided to pay for private Neuro Physiotherapy and went for a one-hour session today. I found out that I have been doing all the wrong exercises for my stiffness and pins and needles, so now have they showed me the correct ones to do after checking my movements and I now know where I was going wrong. I asked about a follow up and they said come back in 2 weeks so they can see the difference it has made doing them at home. I will let you know how I get on.
Steve
Hi Steve,
I did wonder about this myself. My physios just gave me repeat stretchs to do which I have not been doing as spasticity see doesn’t seem to be the answer
Pregabin has played havoc with my mood it’s plummeted and I’ve been an emotional wreck since the reduction of mg reduced from 200 to a 100.
I really hope this new information helps. Was there a waiting list to see privately
Thanks for the update.
Colin
Hi Colin
They said Pregabin is just to ease the pain not to get rid of it and the same with amitriptyline, they said we need plasticity to the brain doing certain exercises frequently, so the brain remembers the movement we do, also I paid £75 for the consultation and exercise then my next visit is £45 for 45mins session and there’s no waiting list as its not the NHS
If you need any more information, please ask.
Good luck Steve
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Hi Steve/ Colin
My wife suggested a neuro physiotherapist months ago so having read what they told you I’m thinking of getting booked in even if it is private and not NHS
Pins and needles in foot are getting worse
My wife also says that pregabaline also acts as a nerve blocker as well as pain suppression so I’ve only been on them 2 weeks and smallish dose so I’ll give them a few more weeks and maybe up the dose as I don’t now seem to be having the side effects ( one was constantly feeling stoned- or what I presume feeling stoned is like)
Richie
Hi Richie
Could be good for you as they explain a lot to you .
Good luck and let me know how you get on.
Steve
Hi Richie/Colin
Just wondering how the Pregabaline was doing as my amitriptyline doesn’t seem to have any effect on me all the usual stiffness if not more. I have noticed when I wake up the stiffness is quite light but after about 1/2 hour it starts to get worse and then movements are restricted. What I find extraordinary is when i don’t move it feels like there’s nothing wrong and then:laughing:
Keep On Trying Steve
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Hi Steve/Colin
I’ve been on the pregabaline for just over 3 weeks and been told they can take upto 6-8 weeks to kick in properly plus I’m only on 150 mg a day so seeing GP next Tuesday when she will most likely increase strength as only started on low dose.
I have had a visit from a neuro physio therapist which I paid for privately £80 (£60 for follow up visit after 4 weeks). She advises to stay on them as they are also a nerve blocker as well as a pain reliever so it’s the nerve blocker I’m needing as pins and needles especially in my left foot have slightly increased, no pain though. I am trying to do a lot more activity and moving so this may be partly to blame but my thinking is I’ve got to try and get on with life as normal as possible.
Anyway getting back to the Neuro physio. I explained all my symptoms to her which I’ve told you both already and with regards my stiff left neck and shoulder she examined me and noticed I had a very slight head tilt to the right and was favouring that side naturally after the stroke as it appeared to be more comfortable with the tilt. So I now have a series of new exercises to try and strengthen and loosen the left side of neck and shoulder !
Sensitive skin and pins and needles is still there on left side but she said that the sensory side is down to the brain finding it’s new pathways.
She said that as a rule of thumb what you have after 2 years is what you can expect to be left with ( but some improvements occur beyond this time scale) so all 3 of us in our little similar symptoms club have another 18 months or so, so something positive to look ahead to
Stay strong
Richie
I thought I was in your similar symptom gang too? 
I opted to stay on 150mg a day for a while even ‘though I’m still getting the burning in my right hand and foot (although in the last few days my foot has gone back to feeling like I’m walking on bubble wrap).
I tried an extra 75mg for three days last week but my eyesight went a bit blurry and my head felt more woozy than usual.
Good luck with your increase and keep us posted.
Yes of course All welcome in this unwanted symptoms gang 
I felt woozy from the pregabaline initially but think my body got used to it quite quickly so hopefully increasing dose won’t affect too much
Richie
Hi Richie/Colin
I think that could be Good news for you as they have identified part of your problem, so you now have to work on it and make it better. Also I visited my physio today for the second time and she said similar things to me She showed me movements to help the brain repath its route and she said its not strength I need because I have the strength its repetitions which the more you do the brain remembers quicker, she said stretching the chest muscles when they are stiff is good procedure but to remember that when you stretch muscles release the stretch very slowly and it will allow the brain to start to correct the problem. She explained to me it is still an early stage of recovery and can continue for upto two years and she said carry on with the exercisers and come back in a month for a 1/2 session.
Keep up the good work you two and maybe one day we may be OK again 
Good Luck Steve
Hi Colin
There’s never a waiting time if you are paying, only NHS have waiting times and to ease your mind my stiffness has now extended to my shoulder and arm so hopefully no more complications as my stroke will be post 6 months in November and they say most symptoms show up between 3-6 months.
Good luck Steve
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I am very interested in this thread as I also experienced a lot of progress with strength and mobility, then got hit with terrible stiffness /tight band feeling n my shoulder, leg and ankle. I have tried several medications which didn’t help and also have increased tingling. Physical therapist do not have any answers and just practice stretching. Because I have movement, the Dr does not consider this to be spacstity,everything on here explains exactly what I feel.
Is there any evidence at all that these things improve for some people?
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@Loshy Thank you for your response. Did you also have tight band stiffness in the face or extremeties?
Oh, ok. I developed upper shoulder tightness then excruciating leg squeezing months after the stroke but nothing seems to affect this. Glad you have some relief.
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I am 6 months post stroke.
I could handle 14 months if my progress mirrored yours. That is some hope.
Hi there
I’m now 6 months post stroke and can without a doubt say that the numbness and tingling in my left foot and hand have got worse as has the stiffness in my knee, shoulder and foot along with tightness in my calf and neck left side.
Like yourself my movement and strength is still very good buy no one seems to be able to tell me why the symptoms seem to be getting worse!
Amitriptyline didn’t work and now on pregabaline for last 6 weeks Initially 150 mg day then GP upped it to 300 mg day. I’ve dropped back down to 200mg day as I was getting quite a foggy head. However Not any effect on the pins and needles despite it meant to be a nerve blocker !
Thankfully non of this has any pain just uncomfortableness
All still a mystery!
I had a hemorrhagic stroke in my thalmus.
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I hear you, miserable and uncomfortable for sure.