Yes. Count me in. I miss you all.
You are a beautiful person. I can tell it already. I hope to meet you on a Zoom very soon.
Hi @jay.langdon , Welcome to the forum but sorry you’ve had to join. I can’t believe how long it took for you to get help.
I’ve also had a right sided Thalamic stroke 4 years ago at 48 suffering left sided pins and needles and painful joints. Other parts of my brain were affected but the Thalamus damage is my main issue with pins and needles remaining and sensory problems with my left hand.
I’ve been lucky with the aftercare of my stroke as I was referred to rehab medicine who I have an open door to and they did prescribe me with Pregabalin which did make me feel drunk and sleepy so I took the decision to stop taking the medication after discussing with the consultant. Definitely ask the Gp what your meds are for, it’s protocol if you have a stroke to put you on statins whatever the reason for the stroke. It’s great to hear you’ve returned to work but put yourself first.
Best Wishes Nat
After 4 years post stroke how are things. I find myself at the moment sore from the neuropathic pain constantly with my drugs just being increased. I keep finding it strange that when I was an inpatient all I had wrong was my pins and needles and since discharge I seem to be getting worse. It seems to be the illness that keeps giving
Hi @jay.langdon, I was given Pregabalin for neuro pain and pins and needles and the dose kept getting increased till it just gave me nausea and even more tiredness so I took the decision to try living with out it. It took away the symptoms of nausea but I have to live with the pins and needles which surprisingly 4 years on I know they are there but I live with it and feel like me.The only stroke meds I was given was pre gab and atorvastatin, statins can cause weakness so speak to the doc if you’re experiencing side effects and get them changed. I had severe pins n needles down my left side of face literally draw a line down centre of face and rather than droop of face mine is tight and eye is more closed it was my daughters wedding last year I had Botox because I’m vain and it gives me relief so hubby knows now my treatments are mediastinal . Stroke recovery is trial and error everyone is different and recovers in different ways but do not worry about questioning why you are on medications and what there side effects are. My stroke was caused due to my congenital heart condition so I take heart meds too. I was told by one consultant “You are an intelligent woman you have to take charge of your own health not rely on others to do what’s right for you, as you are the one most invested in your life” So ask them questions make an informed decision if pregabs aren’t right for you speak to your doc try without, you can always go back on them if you find they were helping more than you realised.
Strange thing to say but welcome you find out that it’s up and down I go into myself and don’t post sometimes as I feel people don’t need to listen to me being miserable but stupid really as that’s what this group is for, I didn’t realise there was a zoom group I have aches and pains I sometimes think it’s the medication we get put on as you have a pill to counteract another and so on I find my legs don’t want to hold me in the morning for a few seconds then I am fine but I am going to the gym to help myself which I would never say I am a gym person. I am still trying to come to terms with giving up my job which I don’t regret but it’s like where am I going from here after 5 months I think that’s a work in progress like you suddenly doing a job you weren’t expecting but it’s brilliant that they have still got a job for you. You’re wife can also post on here because it’s hard on them as well maybe I will dip into the zoom later to see these lovely people that have helped me when I have felt low.
Just to say that the evidence for pregablin helping with some types of post stroke pain is a bit sketchy.
It takes a long time to increase the dose, for me the higher doses made me a total zombie, never got close to the suggested dose, so I came of it and tried something else. Takes a while to come off it as well.
There is quite a long time before it becomes fully effective, takes some getting used to that it’s not immediate. So even if you don’t get a benefit straight away, need to give it 4 weeks, some are even 8 weeks which makes switching between medicines a very lengthy process.
Amitriptyline was the first one I tried after. There is a thought that smaller doses of more than 1 medicine at a time might be more effective. Less chance of side effects with low doses.
One thing I found helpful was regular 4 weekly calls with a dispensing pharmacist ie they can prescribe medicines/changes without waiting for a GP appointment. Not every practice has one. The pharmacist in mine had also worked in the local pain clinic for a time.
It’s worth getting a referral to a pain clinic if the hospital runs one as it can open up other services such as tens machines, acupuncture and psychological support.
@Jul - You’re very welcome to drop in and out as you like
@Nigelglos - the delay in efficacy makes finding a mad that is net beneficial really really hard. A metaphor that stuck with me for decades was when we hired a narrow boat and trying to navigate lock or bridge. When one is skilled the tiniest touch on the tiller 100 yards out allows one to glide serenely through the obstacles. When when is a novice and 30 yards from the obstacle the widest of movements and strongest engine oscillations from full reverse to fall forward do nothing to prevent the shudder as 20 tons of momentum hits a bridge support or a lock gate
To those above who have increasing nearer neuropathy i share my ignorant speculation. I observed in my right arm and some degree my leg that when I couldn’t use it at all they assumed more of a curl posture especially my arm and my PT talk shortening. When I did my exercises in the first couple of years then as I started to persuade my arm to extend I was getting tingling and pain what I suspect was the nerve that had shortened objecting to be lengthened. The medical professionals are keen to throw a pill at everything - did they get commission? I can induce pain in my arm and leg but mostly I can avoid the pain with the exercises that do not push the boundaries too far but do go up to the boundary and very slightly beyond and the very slightly moves a little bit every month .
Of course a solution for one person may not apply to the problems of another but I offer it as an avenue that may be worth exploring. One has the bear in mind Nigel’s comment that not only might some pain meds take a couple of months to reach efficacy exercises to relieve cause will also take months and may not in the end via solution or perhaps I should phrase that as “maybe a source of hope”
Wonder if dishing out a tablet has happened so often, if you see a medical professional and don’t get one, you wonder what’s going on… it’s easier to get someone out of the room if they think they have at least got something out of it. The fact it is very likely it won’t work is irrelevant, maybe the placebo effect.
That placebo effect can be so powerful I wonder why they don’t play on it. Is that any more unethical than dishing out at medicine with no proven benefit ?
It is hard to give medication up. I’m pretty sure my pain relieving medicines offer little or anything but if I give them up, what does that leave me with ?
The placebo and the philosophical are both subjects worthy of debate
I’m sure there is lots of common sense in times gone by that we have lost to our detriment because of the ease of a pill and the immediacy demanded in the Twitter age
As far as giving the pills up is concerned you would at least be starting with a clean sheet! But I’ve no idea whether that would provide the path to salvation or even be bearable in the interim
Back to the philosophical but the challenges of a wicked problem interest me because I think stroke chronic care is a classic case where the participants - on all sides - don’t understand the characteristics of wicked problems so aren’t yet on the playing field
It must be really difficult for someone to understand even some of the basics unless they have experienced the same.
A few months back, my GP asked me what sort of dizziness I was feeling. I perhaps needed him to provide me with a list to choose from rather than me trying to come up with all the words.
The medical team often ask, how bad is your pain on a scale of 1 to 10. Ok, you tell me where a paper cut is on that scale, same for pulled hamstring so we can both play that game ?
Thanks for today it was nice to see faces the beautiful Scottish views joe making me giggle and Kieron is the new Martin Lewis to advise us how to get all these cards two for one and more
AHaha so I addressed my private message to the wrong person because I tried Juls - I wasn’t sure I’d heard you correctly.
I hope you found the ‘cafe’ a welcoming place
We are growing in size so soon (already?) talkative members like me & Joe & kiren will need a way to slowdown for others - I’ve some ideas
See you next or another time I hope
I’ll confirm the next date soon.
Hi Jay, I read your post today and while you’re on a few medications and seemed to have had them changed a few times I wondered if you’re taking any statins. These type of tablets can give you a lot of pain in your leg muscles which can be there at rest as well as while walking. I’ve tried several different statins over a period of 5 years and always get muscle pain in my legs, on one occasion I was told to stop them immediately which I found quite worrying. I’m now waiting for an appointment for a cholesterol clinic at my local hospital but appointment waiting times are currently 20 weeks, so I worked out I should be seen just before Christmas !! I would check with your GP that it’s not the statins though. Love your humour with the illness that keeps on giving it did make me laugh. Hope you get all these pains sorted soon.