28/09/2024, 09:06 - Nigel Price:
[j=file attached]
I hadn’t heard of item 12 before. This is a paper produced in Nigeria.
Not totally sure about it for cpsp.
No mention of anti epileptic medication but opioids.
28/09/2024, 09:13 - Nigel Price:
https://pubmed.ncbi.nlm.nih.gov/17786778/
28/09/2024, 10:44 - Nigel Price:
That feeling of phew, good, that’s out the way for another few days…. How times change !!
The pleasures of doing the medicine box for the next 13 days.
I have found the quickest way for me is to just pop out enough of the repeating medicine type (baclofen and pregablin for me as 3 each morning, lunch and evening) into a dish and then load up each section.
Then do the same for a single medicine and add that where needed. Repeat until done.
Seems much faster
28/09/2024, 10:56 - Nigel Price:
Then the farce of reordering. Yes I know you have taken pregablin for 2.5 years but can you fill out a paper request form each time and drop that into the surgery ?
Ok and when will that be authorised? Soon, definitely soon, assuming there is a GP in. Will you let me know when done ? No, you will just have to ring the pharmacy every now and again on the off chance ?
Mmmm so how long should I reorder before I run out. No idea, sorry. Anything else I should know ?
Yes, we will give you not quite enough tablets so it’s not in sequence with anything else.
Excellent, thanks very much.
28/09/2024, 10:57 - Nigel Price:
[j=file attached]
Might give you a high, I’m not even sure it gives pain relief !
28/09/2024, 11:21 - Lorraine:
Don’t you have your meds on repeat prescription?
All 6 of mine are, and when I’m down to the last weeks worth I reorder from the online site. I usually just pick them up when out shopping later in the week.
I sort mine out into daily doses for the week into a pill sorter. I usually load it every Saturday. Helps keep me organised and rarely miss reordering anything.
And to make sure I do remember, I usually put those med packs by my computer ’til I do. Then they’re moved to the kitchen windowsill until I’ve picked them up.
It helped an awful lot in the early years post stroke.
28/09/2024, 11:24 - Philip Rietti:
I’m not sure about relief either. I had been advised to reduce down from 600mg Pregabalin to see if it makes a difference if I’m off it. Once down to 150mg I began getting increasing nerve and muscle pain. So maybe it was doing some benefit
28/09/2024, 11:26 - Nigel Price:
Yeh I do Lorraine apart from 2 where we have to manually reorder.
Both were on repeat until around 6 months ago and now we have to fill out a paper request, drop it in a box in the surgery. Then it’s in the lap of the gods.
We had a note from the surgery (not just to us) highlighting the increase in paper request forms and had everyone tried repeat prescriptions. If only
28/09/2024, 11:31 - Nigel Price:
I have missed the odd medicine when reminder on phone hasn’t worked as battery flat.
Not sure if it’s thinking it might worsen or genuinely has when that happens.
I just can’t get past 75mg of pregablin 3 times a day. Just became a total zombie
28/09/2024, 11:40 - Philip Rietti:
I’m on 600mg daily with no effect on general eell.being. no side effects other than sometimes falling asleep on dofe till early hours of morning. Frustrating so I’ve started using alarm on phone.
28/09/2024, 11:43 - Philip Rietti:
Oh. And forget to check spelling when sending messages 😄
28/09/2024, 12:10 - Ruth Oxley:
Same here with my prescription @EmeraldEyes
28/09/2024, 12:29 - Nigel Price:
https://www.bathcentreforpainservices.nhs.uk/
28/09/2024, 12:29 - Nigel Price:
This might be an option ?
28/09/2024, 12:30 - Philip Rietti:
I havr good meds system. I just.email surgery. They say allow 5 working days. So i then call pharmacy around then although I’ve been getting an sms from them to day its in and it’ll be delivered the next working OR I can collect in person
28/09/2024, 12:58 - Llareggub:
I’m also prescribed 600mg pregabalin a day although over the last month or two I’ve been reducing it myself to see how much it’s actually helping these days. When I first started on it I was moved up to 600 mg as I couldn’t sleep due to the pain. My reduction regime has got me down to 150mg this week (and plan to go lower if I can). Currently the pain has ramped up but I can still sleep just about and I think that my perception of some sensations has improved as of course the drugs block “good” signals as well as “bad”. As far as re-ordering I just do it online via the NHS App and the pharmacy (Tesco) text me when it’s ready to pick up.
28/09/2024, 13:10 - Nigel Price:
It does look like the whole approach is inconsistent. My GP refuses to put all the medicines on repeat so I can’t use any of the online apps.
It doesn’t even look like I am taking it as the hospital can only see repeats
28/09/2024, 13:25 - Lorraine:
You’re going to have to badger them to get with the program. Even the paramedics could see exactly what medications I was on. Which was a godsend for as I certainly couldn’t talk and hubby couldn’t come with me as we were in lock down. Doctors at the hospital didn’t have to grill me, other than to confirm with a nod. It’s a no-brainer!
28/09/2024, 13:36 - Simon Harris 🙃:
My meds are simpler, I do repeat prescription, keep them in a small wicker basket with a piece of kitchen paper between current blister packs & unopened ones. When I’m two weeks away from running out I reorder 🙂
28/09/2024, 14:40 - Llareggub:
As far as a reminder goes for re-ordering I’ve just got a meeting set on my phone with a 4 week re-occurrence as although they give you a “months” worth they actually give 4 weeks worth (that means 13 prescriptions a year so an extra £10 to the government coffers, from those who have to pay).
28/09/2024, 16:48 - Ruth Oxley:
I contacted them at the beginning of the year to ask about getting referred. They replied to explain how it would work…
…
All patients referred to our service need an initial assessment and if a programme is recommended by our clinical team, they will then be put on to the relevant waiting list and contacted when a place becomes available. The initial assessment is usually with a Pain Consultant and a Psychologist but may additionally include a Physiotherapist. All programmes, whether an intense individual or a group programme, are psychology led with input from physiotherapists and occupational therapists.
It is worth mentioning that our private and NHS patients are seen within the same timescales in terms of appointments. The main difference in the services is that NHS patients have to follow a strict pathway, set out by NHS England which can take some time to complete. Private patients don’t have to complete this pathway.
If you decide to refer we would need a referral letter with all relevant reports and copies of the GP records such as:
• Copy of all clinical letters from all of the local services that have been involved in the patient’s pain (such as Pain Consultants, Orthopaedic Surgeons, Rheumatologists, Adult/Adolescent Mental Health etc.) within the last year.
• Copy of all clinical discharge letters from any previous admissions that the patient may have had.
• An up to date Patient Summary
Please note the following:
• Any assessment and programme places for private patients are only offered once full payment has been received and confirmed by the finance department.
• Currently all BCPS assessments are being conducted via Teams.
Should you have any further queries please do not hesitate to contact me.
28/09/2024, 16:49 - Ruth Oxley:
[BCPS Private Patient Referral Form revised Feb2020.pdf]
[j=file attached]
28/09/2024, 16:50 - Ruth Oxley:
[BCPS Private Patient Leaflet_updated_ February 2020.pdf]
[j=file attached]
28/09/2024, 16:50 - Ruth Oxley:
[j=file attached]
28/09/2024, 16:55 - Ruth Oxley:
I don’t think that’s all of it, but you get the idea. I ask my GP about a referral and just got referred to my local pain clinic (this was April), I haven’t got an appointment yet 🙃
28/09/2024, 16:56 - Nigel Price:
No acknowledgement?
Just in case gp didn’t send it off, might be worth a chase ?
28/09/2024, 16:57 - Nigel Price:
Thanks for posting them. I have looked a few times. Might need their help at some point
28/09/2024, 17:22 - Ruth Oxley:
The gp didn’t entertain the idea of it, they just said all they could do was referral to local pain clinic. I’m going to gp next Friday so might ask again and I’m also going to ask about Walton hospital.
28/09/2024, 17:25 - Nigel Price:
I discussed this with the pain clinic in Bristol. I could attend a course with them spread over 10 weeks I think or do a similar thing in Bath in one block.
28/09/2024, 17:33 - Simon Harris 🙃:
You’d think this is somewhere the SA would apply specialist advocacy services too ! 🙁
Add it to the list!!
On a related note Do you think we are now being blanked by Research @Nigel Price ?
28/09/2024, 17:43 - Nigel Price:
I don’t know if blanked, hoping we forget or just not in any way shape or form any sort of priority.
I have pretty much written them off now.
There does feel like there is so much the SA could do with not much effort. Get the bath pain clinic to present via zoom with a Q&A.
What does the CEO do to justify that money. Few tweets, the odd meeting….
28/09/2024, 17:46 - Simon Harris 🙃:
I’ll reply in Strokers so as not to politicise cpsp 🙂
28/09/2024, 19:46 - Ruth Oxley:
All I ever found on SA was that cpsp is a thing - that’s all, no help or advice. Until @Simon Harris invited me into the forum, and now here we are on WhatsApp 🙄🤷♀️
29/09/2024, 11:23 - Nigel Price:
https://toastybody.com/products/heated-gloves
29/09/2024, 11:28 - Nigel Price:
Have gone for these today to try to reduce the hand pain.
I found that wearing a standard glove, my hand didn’t like the contact with the skin.
The lower heated temperature on the heated gloves is in the region of the hydrotherapy water temperature and I know that helps.
Will let you know if it’s any good. £50 seems a lot (for me) but I think the hand pain triggers other areas so hoping it will be worth it
29/09/2024, 11:57 - Ruth Oxley:
I’ve looked at these before, but never taken the plunge. I’ll be really interested to see what you think 🤔 🤞
29/09/2024, 12:00 - Nigel Price:
The jury was very undecided yesterday. What was worse, reacting to the perceived cold (anything other than some warmth it seemed) or the touch of the glove.
I am hoping that the warmth knocks the other poor sensations out.
30/09/2024, 04:03 - Deann Waltz:
I’m looking for heated socks, preferably ones that go clear up the thigh. Or heated pants and socks? But I’d have to cut the right side out or it would sweat all the time! I suppose I could put the right leg on my left arm provided it would still heat!
Maybe I’ll just have to design some. Can’t be that hard.
30/09/2024, 08:06 - Nigel Price:
It looks like you can buy thigh wraps or heated knee wrap ie two items to achieve the same sort of thing ?
30/09/2024, 08:08 - Philip Rietti:
[j=file attached]
Could spend uk wet and windy months in a warmer climate
30/09/2024, 08:47 - Simon Harris 🙃:
There is stuff is definitely on eBay and Amazon Do you want me to give you some links
30/09/2024, 09:03 - Ruth Oxley:
I much prefer that to buying heated clothing 😍☀️☀️
30/09/2024, 11:47 - Deann Waltz:
I don’t know… The hot weather here does not Make it any better, but a heated blanket does. Still a warmer climate is nice at times.l
@Simon Harris, If you give me a couple of search words I can check Amazon. I wouldn’t know what to call things to search
30/09/2024, 11:55 - Philip Rietti:
https://www.uclahealth.org/medical-services/neurosurgery/dbs/treatment-options/cingulotomy#:~:text=This%20is%20also%20referred%20to,and%20has%20few%20side%20effects.
30/09/2024, 12:17 - Philip Rietti:
Do this is what Prof zrinzo Advises. Spring 2025 unless a place becomes available b4.
He said that the waiting list is so far longer in uk. He runs the pain side of Queen’s Square hospital, London. Amongst others.
He’s performed over 3000 brain ops. Around 300 CPSP / Thalamic pain patients. Around one third show mild benefit, one third show little or no difference, one third demonstrate a real positive outcome. By that he said these patients felt a marked difference in their interpretation of pain slowing them to better manage the pain.
As yet there is nothing beyond traditional meds that shows a positive outcome for a minority of people. I.e. medx don’t work for the majority of people in the studies.
30/09/2024, 12:17 - Philip Rietti:
Sll interesting stuff but, there is a slight risk of a seizure during or shortly after the procedure.
I’ll consider but it seems worth a shot.
Simply put, the pain remains unchanged but the brain now doesn’t see it as a threat in turn the perception of pain becomes lower, in turn allowing movement easier without neuropathic pain.
30/09/2024, 12:18 - Philip Rietti:
Sll interesting stuff but, there is a slight risk of a seizure during or shortly after the procedure.
I’ll consider but it seems worth a shot.
Simply put, the pain remains unchanged but the brain now doesn’t see it as a threat in turn the perception of pain becomes lower, in turn allowing movement easier without neuropathic pain.
30/09/2024, 12:35 - Nigel Price:
Interesting. I haven’t seen that mentioned in any paper I have read on cpsp.
And looking into it, I am not surprised. It’s considered an absolute last resort and the only report on it seems to be someone in the US whose pain was so bad, they had been granted the option of euthanasia !!!
30/09/2024, 12:43 - Simon Harris 🙃:
Try I’ve shared a Brand Store on Amazon with you. https://www.amazon.co.uk/stores/Fernida/%E4%B8%BB%E9%A1%B5/page/D19C6662-6968-4277-8B7C-2381C343B887?ref_=cm_sw_r_apann_ast_store_Y26S9B70MTVQX39JCN10 and from there Amazon will send you others at guess
30/09/2024, 12:48 - Nigel Price:
I wonder what brain ops he has been carrying out. DBS isn’t approved by the nhs and nothing comes up NHS wise.
Seems a bit extreme, 5% chance of seizure but I guess if you have been approved to end your life, that’s no big risk
30/09/2024, 13:01 - Deann Waltz:
The US citizen approved for euthanasia? Still illegal here.
30/09/2024, 13:01 - Nigel Price:
Yeh and in the uk
30/09/2024, 13:01 - Deann Waltz:
Thank you Simon I couldn’t think of the words. Of course I’ve been up again all night!
30/09/2024, 13:03 - Nigel Price:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10962879/
30/09/2024, 13:05 - Nigel Price:
Think I have wrongly assumed US as the adverts for it were us based.
On one site was a question, is it the same as a lobotomy ?
DBS is using electrical current to dampen down the pain and is reversible. This is looking to destroy a very small part of the brain and isn’t reversible. <This message was edited>
30/09/2024, 19:45 - Nigel Price:
I am trying an idea currently for when there is numbness on my left foot/leg or too much sensation. Not sure if it will work with pain, maybe mild pain but who knows.
My brain is understandably super conscious of the lack of or too much feeling.
I am finding that if I concentrate hard on the normal feeling from my good foot, my brain almost ignores the problem feeling.
Maybe it’s a bloke thing and can only concentrate on one thing at a time !
It seems to help the walking as it gives reassurance of a degree of normality.
30/09/2024, 21:36 - Deann Waltz:
You have stumbled on to one of the therapies. It’s kind of like mirroring, and a type of biofeedback. I’m glad it’s working some! Hopefully it will continue, then work even better over time.
01/10/2024, 09:19 - Nigel Price:
Yeh it struck me it was like mirroring.
I found that very appealing but this was always more than just my hand.
01/10/2024, 10:12 - Nigel Price:
I had a reply from the local MP this morning following a reply to her on TMS.
It’s one of those replies to her that is difficult to understand. It’s kind of missed the point in that my query was why hasn’t this gone beyond just research after 11 years.
Whatever, it looks like being a Liverpool only service in the UK as it stands. I am not really sure who the provider is
Thank you for your email dated 28 August 2024 regarding access to Transcranial Magnetic Stimulation (TMS) for the treatment of chronic pain on behalf of your constituent. TMS is not commissioned locally. This treatment be requested via an Exceptional Funding Request from a patient’s clinician. However, clinicians would have to demonstrate clinical exceptionality above a large cohort.
During the most recent review of the ICB’s commissioning policy for Referral to Secondary Care Pain Services, there was no indication from the provider that provision for this intervention should be included within the commissioning policy. BNSSG ICB is allocated NHS funding to deliver the services required for their area’s population based on needs. All health services for BNSSG must be delivered within the allocated government funding. Difficult decisions must be made to ensure ICB expenditure does not exceed this funding. Difficult decisions are made through the ICB’s Governance processes and structures.
The governance information relating to BNSSG ICB is publicly available here. Commissioning policies play an important role in enabling the ICB to do this, by prioritising the commissioning of medical interventions, and establishing the circumstances under which individuals can access treatment. Our commissioning policies are guided by national guidance such as that from the National Institute of Health and Care Excellence, however the ICB is under no obligation to follow each guideline in their entirety.
01/10/2024, 10:41 - Nigel Price:
I have just heard that my DBS operation may be delayed by as much as 9 months as the manufacture of the device needs to make some changes. It’s part of being FDA approved in the US.
What will I be like then….. Very very disappointed but there is no plan B so just got to lump it.
01/10/2024, 11:38 - Ruth Oxley:
That’s really disappointing. I’m so sorry for you.
01/10/2024, 11:54 - Nigel Price:
There is a real complication for me in that unless the surgery is complete by March, my long term sick scheme will run out with work. I still don’t know exactly what that means for me
01/10/2024, 13:19 - Ruth Oxley:
Have you spoken to your work about it, might they support you until the op at least?
01/10/2024, 13:52 - Nigel Price:
I’ve passed on the delay Ruth to my line manager. I suspect they will just go with the facts as they are. It’s likely they have to make a decision before the scheme is up anyway.
The success of otherwise won’t be known for sure perhaps until 4 months and a week or 2 after the Op.
If it is 9 months, I will still, just, be on the work scheme
02/10/2024, 07:18 - Philip Rietti:
[j=file attached]
02/10/2024, 07:28 - Deann Waltz:
Good morning. Actually bedtime for me, so good night!
02/10/2024, 11:23 - Nigel Price:
Just to give a bit of an update on the pain clinic and what help might be unlocked after getting a referral there.
I have just had a zoom call with a neuro physiotherapist. This is to go through triggers, how the nervous system works and reacts. Follow up call in 3 weeks.
Prior to this, I have had two calls with a pain psychologist. At the stage it has been mainly about gathering information.
Before that there was the pain clinic consultant to discuss medication. A group session to go through possible options to investigate.
There was a offer of 6 free sessions of acupuncture.
It might be there are some different approaches and services available between the various pain clinics.
02/10/2024, 11:35 - Nigel Price:
If I was to sum up the pain triggers, I would suggest it’s not the triggers themselves but the body reaction. Tension seems to be the key and it’s possible the body has been tense for so long it doesn’t really recognise it any more.
Stress increases tension.
Fight or flight increases tension. Same for cold, same for pain. The body wants to get away from the source.
Trance, mindfulness is relaxing. Warm water, on a lounger in the sun, heated clothing, microwave heat packs, body loves a bit of warmth, all relaxed, less tension = less signals bombing around the body, reduced sensation to have to deal with. Less pain ?? <This message was edited>
02/10/2024, 14:19 - Simon Harris 🙃:
Gonna try to create a digest of the convo so far….
02/10/2024, 14:21 - Mama Gee joined using this group’s invite link
02/10/2024, 14:49 - Nigel Price:
Given the pain clinic is part of the NHS, if you haven’t taken advantage of it’s services so far ? My own experience is that not every contact produces results, especially early on but overall, helpful. Apart from time, not much to lose.
The other source of info, especially early was the local stroke group. Whilst it’s not pain specific in its presentations, one of the volunteers was able to email one of the hospital consultants to get some answers to general queries.
02/10/2024, 14:49 - +44 7947 391706 joined using this group’s invite link
02/10/2024, 15:27 - +44 7802 793777:
👋👋👋👋
02/10/2024, 15:26 - +44 7802 793777 joined using this group’s invite link
02/10/2024, 15:43 - +44 7947 391706:
Does anyone suffer with lower back pain 😢
02/10/2024, 15:48 - Ruth Oxley:
Yes, but only on the affected side around. Do you get it across the whole of your back? Might be because you’re holding yourself tense to compensate for affect side pain? 🤔🤷♀️
02/10/2024, 15:59 - Deann Waltz:
@Mike, I have only recently started having back pain. @Ruth’s suggestion sounds a likely explanation.. I am very careful to ensure it’s not kidney or something else explainable. The pain in my side makes it very hard to get comfortable in any situation. The back pain most often comes after a full night of sleep. The side pain very often keeps me from sleeping at all.
02/10/2024, 16:47 - +44 7947 391706:
Yeah the same for me deann
02/10/2024, 17:03 - Lorraine:
Had lower back pain the past 2 days actually. Caused by one relatively simple exercise at Monday’s fitness class. It’s basically muscular but brought on as the result due to mobility improvements in the hips/leg. I give it heat, 2 paracetamol and 1 Ibuprofen and carry on with my daily workouts. But I’m very familiar with lower back issues so I know how to manage it when issues arise. I’d suggest you see your practice physio if you have one at your surgery or ask you gp to refer to physio. Back issues can be cause by any number of reasons, particular if you are not very mobile. The key is to not present it as a post stroke symptom when you speak with the gp/physio, have them treat is a separate condition. I know of certain stretches you could probably benefit from but because I’m no expert and don’t know your physical background, what you are capable of, I’m certainly not going to make any suggestions 🙂
The half of that pain will be from tension in the lower back, hips, legs, but particular the hips from load baring, the weight they have to carry just coming from sit to stand. The muscles get tight, more rigid over time, worsening the pain. <This message was edited>
02/10/2024, 17:41 - Simon Harris 🙃:
Hi folks
Since WhatsApp doesn’t let anyone see prior messages I’ll upload a digest tomorrow & I’ll also include Nigel’s summary of cpsp that was ‘lost’ cos the SA are …
02/10/2024, 18:01 - Mama Gee:
Thank you 😊
03/10/2024, 10:24 - Simon Harris 🙃:
DOC-20241003-WA0002. [j=file attached]
03/10/2024, 10:31 - Simon Harris 🙃:
The first bit of text is Nigel’s summary of CPSP which is very good
03/10/2024, 11:10 - Nigel Price:
[j=file attached]
Apologies if I have posted before but this is something that rarely appears on the net.
The first figure (nnt) is the number of people who need to take it before 1 person gets 50% pain relief.
The second figure is the nnh score. How many people need to take it before 1 person has a negative effect. In other words,how likely you are to have a side effect.
I see on Facebook people posting, x doesn’t work, y doesn’t work, it’s useless and occasionally someone will post, worked for me.
That is exactly what is expected but this rarely gets communicated.
It is yet another facet of medicine which is a percentage game.
Plus of course a placebo effect. Would be interesting to see what that is in comparison.
Nomcebo arises when someone has a negative impression of a medicine or treatment and the chances of a negative outcome are much higher as a result. Difficult one as you need to read side effects for safety but best to think it will never happen to you !!
The power of the mind …
03/10/2024, 16:16 - Simon Harris 🙃:
Maybe of peripheral interest (pun almost intended)
https://nrtimes.co.uk/deep-brain-stimulation-instantly-improves-arm-and-hand-function-post-brain-injury-hnc24/
03/10/2024, 16:21 - Nigel Price:
Got to feel a bit sorry for the monkeys who presumably had to lose the function to get it restored.
I got the impression from the surgeon I was talking to that there are some real possibilities with DBS that are not in the mainstream.
Reduced blood pressure was one.
03/10/2024, 16:36 - Simon Harris 🙃:
Yeah that really stretching morality isn’t it 🙁 they did it for CIMT experiments too but a less enlighten world in 1910s & Taub escaped most consequences in 1980s (cruelty to animals act doesn’t apply to research monkeys !)
But how to discover…?
03/10/2024, 16:42 - Nigel Price:
The whole grave robbing was really for research
“Until the enactment of the Anatomy Act of 1832 in Britain, the taking of corpses from graves was not itself illegal, as the corpse had no legal standing and was not owned by anyone. What was illegal was the dissection of the corpses and the theft of items other than the corpse itself. Physicians and medical students who purchased corpses had little interest in where they came from, and the body snatchers (who were also known as resurrectionists) usually left behind everything except the body in the coffin. While body snatching might not have been illegal, the practice was considered morally and religiously reprehensible, as was dissection itself. It was not until the late 19th century that medicine became widely respected, and, especially in the18th century, dissection was generally viewed as a form of criminal punishment that followed execution.”
03/10/2024, 16:56 - Simon Harris 🙃:
Edinburgh was the centre of it - lots of cemeteries with guard posts!
03/10/2024, 18:26 - Ruth Oxley:
Can I just ask, has anyone tried or taking - lamotrigine 200 mg?
If someone’s already mentioned they are I’m sorry, my memory is shocking - I have to read things a million times lately before it sinks in 😞🤦♀️
03/10/2024, 18:53 - Simon Harris 🙃:
No need to apologise - we’ve all had brain damage!
03/10/2024, 19:13 - Nigel Price:
Hi Ruth
I did a bit of research on this as I thought, hold on a min, why isn’t this on the list of real possibles. Looks like it should be offered without a 2nd thought.
I still don’t know why not offered as a back up as it’s well known preg are garb are hit and miss by their nnt scores. I think it’s important to remember that the medical community on the whole have little understanding of cpsp. Unless you get through that layer of minimal knowledge to specialists.
Physio will treat you for a physical injury and medication is not specifically for cpsp.
What I had completely forgotten is my daughter tried this to control her epilepsy and did have a bad reaction.
“followed by a red or purple rash that spreads and forms blisters. The affected skin eventually dies and peels off.”
If she hadn’t had this (more common in children) I would have definitely pushed to try it.
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)71732-3/abstract
https://www.neurology.org/doi/abs/10.1212/WNL.56.2.184#:~:text=Lamotrigine%20was%20well%20tolerated%20with,treatment%20for%20central%20poststroke%20pain.
03/10/2024, 19:15 - Ruth Oxley:
Thanks for the info, that sounds horrendous for your daughter 😲☹
03/10/2024, 19:21 - Nigel Price:
Yeh was a bit scary at the time but fortunately ok. We had to keep trying them as she had a fit and wouldn’t come out of it so we had to use the emergency medicine. She had gone blue.
We ended up with sodium valproate in the end which turned out would have caused birth defects but not really an issue for us.. Sounds like a thalidomide type cock up.
03/10/2024, 20:04 - Ruth Oxley:
Oh my goodness! That is so scary! How old was/is she? Does she still suffer with epilepsy, is it a lifelong thing or could it ever subside?
03/10/2024, 20:12 - Nigel Price:
Luckily it was well controlled from that point and apart from some vacant spells. Nothing even remotely like it.
Epilepsy seems a bit like cpsp in a way. Loads of medicines, some with really very poor side effects and it’s pot luck finding one that works for you.
I have read that it’s quite a large proportion of people with epilepsy who have to learn to live with it, perhaps another common item
03/10/2024, 20:24 - Simon Harris 🙃:
Sounds like the epilepsy malfunction of a ‘brain-storm’ has relavance to the cpsp malfunction of signals that aren’t there - research project?
03/10/2024, 21:05 - Nigel Price:
Yeh I think there is something in that. Sure research (1 pain item in 6 years) are not all over this) Cpsp seems to have multiple elements, it’s not just pain but sensation overload at times as well. Why does the same part of the body have such limited sensation at times, huge over excitability at others but fine at other times. Why is it so varied. Does the brain shut it down at times (numb), let too much signal through at others (overload) ? And just completely misinterpret at others and if it doesn’t know, default to pain as that has been the normal approach for thousands of years. If I don’t know, it’s pain so you do something about it.
03/10/2024, 21:06 - Deann Waltz:
I mean I don’t love it but the love and this case is an exclamation point!
03/10/2024, 21:07 - +1 (916) 425-3153 joined using this group’s invite link
03/10/2024, 21:17 - Nigel Price:
[j=file attached]
I’m guessing Simon these are found most often in the Highlands rather than the streets of Edinburgh?
04/10/2024, 07:03 - Mama Gee:
Morning everyone, my name is Jackie. I know my name comes up as Mama Gee, my daughter, set this up, and I didn’t know how to change it it’s just a standing joke now 😀. Thank you, Simon, for informing me of this group, which I have read half of the message down load, but I am on holiday in Salou and will read the rest when home at the weekend. What I have read so far is really informative. I have been told by 1 stroke, Dr. I don’t have pain, and the other said it is neuropathic brought on by my state of anxiety and stress, and if I stop stressing, it will go away 😤. They don’t listen, and I believe they think I’m making it up! I’m not on meds. The side effects were too difficult to cope with, and they did nothing to help! I’m discharged from Stroke Specialists long Story and GPs said they could not help. I tried Gabapentin and preg did nothing. Well the sun is coming up and it’s the only thing that seems to help so I’ll chat soon x
04/10/2024, 07:10 - Mama Gee:
Oh! I am trying edibles on a night to sleep, and they are helping 🤪 … I just bite a tiny bit of it, not a full one
04/10/2024, 07:26 - Philip Rietti:
Morning mama gee (Jackie)
04/10/2024, 07:27 - Mama Gee:
Hi Philp 👋
04/10/2024, 07:27 - Philip Rietti:
It’s Philip not Philip. 😂
04/10/2024, 07:27 - Philip Rietti:
Philp 🙈
04/10/2024, 07:28 - Nigel Price:
Hi Jackie, do you have any other support at home, such as physios ?
Just from my own experience which may or may not be totally relevant, my initial suggestion would be to ask your GP to refer you to your local hospitals pain clinic. That should then open up some more support covering quite a few different aspects. I don’t know how typical the Bristol pain clinic services are to elsewhere to say you will get a and b and c help. I suspect one bit which might be typical is the time taken to get to see someone initially.
My second suggestion would be to ask your support team (assuming there is one, mine was via my at home physio) if they can arrange some free hydrotherapy sessions for you. My experience has been 6 free sessions with physio support in the pool to develop an exercise plan which was given to me after the 6th session. This is a mixture of things they think are helpful and exercises i enjoy doing.
The sessions after cost me £15 as a guide for 30 mins and I do the exercises on my own.
Hope this helps.
Cheers
Nigel
04/10/2024, 07:39 - Mama Gee:
I work @ our local hospital for the pain management team (admin) ridicules as it is my GP would not refer me! All comes down to cost in Bradford! The Pain Dr’s have verbally helped me but can’t do anything without the referral. I ended up putting in a complaint to my GPS which has made it worse for me getting any support. I gave up last year trying to get help.
04/10/2024, 07:41 - Nigel Price:
Can you switch GPs ?
04/10/2024, 07:42 - Nigel Price:
Or can you get an appointment with neurology and perhaps they can refer you ?
04/10/2024, 07:43 - Mama Gee:
They own the whole area I live in. They took over all the local small practices. I would have to travel long distances.
They refused me to see a neurologist . I have hit brick wall everywhere I turned hence gave up trying
04/10/2024, 07:47 - Nigel Price:
I know it’s tough post stroke to have the energy to do some things but there must be a formal complaints service ?
Have you officially been diagnosed with cpsp ?
04/10/2024, 07:51 - Mama Gee:
I found that if I asked questions, they didn’t like it. They want you to do as they say and don’t want to explain.
I complained to GPs and local hospital in writing without a great outcome. They just denied and blamed me as uncooperative!
04/10/2024, 07:55 - Mama Gee:
It was just a really shit time, I was confused enough, and no one wanted to listen. Apparently, I had a rare stroke Pontine infract. I don’t think they knew enough about it, and tried to put me in a box with everyone else’s 🤷🏻♀️
04/10/2024, 08:00 - Mama Gee:
I haven’t been diagnosed. They said I was causing the pain myself . 1 Stroke Dr said neuropathic pain that was it
04/10/2024, 08:17 - Simon Harris 🙃:
The English process TO launch a formal complaint is called PALS patient advice line or something
https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
Contact your MP & the press. Also https://www.britishpainsociety.org/ has a members voices the lay member uses twitter @Fionas_Story so you could reach out there too
We have the same non- cooperation shit from the stroke association 🙁
04/10/2024, 08:21 - Mama Gee:
I went through these, and I personally do know them with working at the hospital. I got an apology, but they also said I was uncooperative, and I was confused after my stroke and must not understood them!
04/10/2024, 08:21 - Ruth Oxley:
Contacting MP and press is a really good idea @Mama Gee 🤗
04/10/2024, 08:26 - Mama Gee:
I sound like a real bad complainer. None of you personally, no me, it was so hard trying to get some understanding.
This sounds bad, and don’t judge me. I am going to tribunal new year, I am being supported by Unison taking my work to court for unreasonable adjustments and Bullying and harassment under the Equality Act 🤦🏼♀️
04/10/2024, 08:33 - Ruth Oxley:
You’re not a bad complainer. You’re incredibly frustrated at not being heard. It’s really hurtful when people don’t believe what you’re telling them.
We all do understand your pain physically and emotionally, we’re all going through it and we’re here to support and advise you. Never feel embarrassed or judged on this forum.
This forum has been such a help to me, I actually feel less lonely in my suffering now. ❤❤
04/10/2024, 08:39 - +1 (916) 425-3153:
My name is Angie. I live in the USA. I had a stoke 10 months ago and cannot get an appointment with a neurologist to discuss my symptoms. I am told I don’t need one. My GP will refer me, but I can’t get in. I got to PT every week, but they can’t help with my symptoms. What kind of doctor can help with numbness, balance and tone issues? Thank you.
04/10/2024, 08:42 - Mama Gee:
Thank you, Ruth and everyone, I just got so tired and started to believe it was my fault. Then, when work started being abusive towards me, I got a fight back to stand up for myself and put the complaint in against my work . It is a bit scarry going up against the NHS, but this is a bigger picture than me, and I hope I win to encourage others we have rights
04/10/2024, 08:55 - Simon Harris 🙃:
Nigel and I are at very similar stage with the stroke association. We received the report of our joint complaints last thing yesterday. Depending on what it says I will share it here
When you complain about the same thing for the third time it is hard not to feel a certain degree of paranoia and “am I raising a valid concern”
04/10/2024, 08:58 - Simon Harris 🙃:
Hear hear 🙂
I am going to make one point though. the stroke association have a forum and we have a community and the stroke association thus far have been either unhelpfully deaf & neutral or activly poisonous - that’s why we’re here on WhatsApp
04/10/2024, 09:06 - Simon Harris 🙃:
Hi Angie 🙂
This thread focuses on neuropathic post stroke pain so you’ll probably get better advice in the general thread of the community 🙂 having said that Deanne is also in the states and will have a better understanding of your health care access than us Brits who have the NHS.
Independent of healthcare access Numbness, tone & balance would be different specialisms. Numbness is about nerves and rebuilding connections and may come over time and can be helped with trying to stimulation, tone is physiotherapy and balance is vestibular which is Ear nose and throat (ENT) but again neuro and depending on the cause there are exercises
I actually suggest using this invite https://onlinecommunity.stroke.org.uk/invites/Kco7qcYKkH to join the stroke association forum where the community will be welcoming and then posting your question there and I can point you to resources and people with similar challenges <This message was edited>
04/10/2024, 09:23 - +1 (916) 425-3153:
Thank you!
04/10/2024, 09:55 - Lorraine:
Balance can either vestibular or muscular and it can be a combination of both 😉
04/10/2024, 10:20 - Simon Harris 🙃:
@Angie Papendick an FYI Lorraine is also ‘EmeraldEyes’ in the forum - you just asked about driving 🙂
04/10/2024, 12:22 - +44 7947 391706:
Whos got spacicity in there bad arm and how u feeling with shoulder pain
04/10/2024, 12:27 - Nigel Price:
That’s quite an interesting question Mike. It feels like I have spasticity at times but the physio assured me I don’t. It’s just the sensations playing usual tricks with cpsp
04/10/2024, 12:28 - Simon Harris 🙃:
My (when I had one) PT said I don’t have spasticity but I don’t control when the muscles will tight
I do get some pain not I think neuro but secondary to the tightness
04/10/2024, 14:48 - Lorraine:
Hi @Angie Papendick welcome. I have replied to your post on the forum. Hope it helps 🙂 <This message was edited>
04/10/2024, 16:04 - Nigel Price:
Today has been a bit difficult. Hydrotherapy this afternoon, my one reliable source of pain relief turned into a shocker.
My foot got a bit cold on the floor prior to getting in. Even though it’s a warm heated pool, that was it, once that alarm gets triggered there is just no turning it off it seems. Agony, really bad, could barely put any weight on my left hand side.
Think I am going to have to buy some beach shoes so it doesn’t happen again.
04/10/2024, 16:07 - Mama Gee:
Gosh hope your okay, did you manage to get in the pool at all?
04/10/2024, 16:20 - Nigel Price:
Yeh I did manage to get in thinking it would ease but omg, it was like the floor of the pool was full of 3 pin plugs, Lego and nails.
04/10/2024, 16:41 - Philip Rietti:
Hi all. I get mixed responses. Some docs say spasticity whilst the pain specialist and Neurosurgeon say its the bad message emanating from brain to the affected side causing neuropathic pain. No cure I’m told once I’d tried all the current meds andvthey have had littler no effect.
My entire affected left leg, arm, shoulder, fingers, neck, head, ear….are all feeling tight and at times rigid. Best time when i wake in the morning and lie in bed. Everything is calmer. Then as soon I move ..wham, it all starts up, increasing until I’m washed and dressed, then remains constantly high throughout the day.
04/10/2024, 16:43 - Philip Rietti:
I have appointments with neurologist and pain specialist nect week. They’re considering a baclofen pump
