Hi everyone, I'm Bill a stroke survivor & I am wondering if anyone out there can help me?
I have pain constant all the time down my left hand side of my body, in my chest, leg, & knee & foot. I had a scan which said the back of my head is dead, due to the POC stroke. So is there anyone out there who can help me get rid or ways to ease the pain?
Thank you very much.
Hi Bill-- This may or may not work. I had a lot of leg spasms after my stroke. CBD oil would stop the spasms. I have read that many have found some pain relief using CBD oil(I liked chocolate mint the best). Do some research on the net on it. You can also order it on the net. Be sure it's a well-known, reputable outfit. I also checked with my doctor and cardiologist and both were ok with it. I used the under the tongue drops because it is supposed to enter you system fastest. But there are also CBD gummies, which taste better. They say to start at a relatively low dose (8-15 mg), wait 1/2 to 1 hour, then increase if you don't feel any results, until to do feel somewhat better. It may just alleviate it a little, not totally. I don't know, but for my spasms 20-40 mg.( 1/2 to 1 eyedropper) took them totally away. (I'm 120 lbs.) Also alleviated my anxiety and insomnia. Best of luck to you. Maybe some other folks will have some ideas. I'll remember you in my prayers tonight, Bill.
Jeanne
Many thanks Jeanne. I have tried the strong strength of CBD oil, but it didn't work. I have also tried morphine patches too from the consultant but again these didn't help with the constant pain. I have tried all sorts of medication from the doctor for chronic pain but nothing has worked. Thank you for your advice, and I will try the CBD oil again. I even tried cannabis from a factory in Benidorm when I was there, but even that didn't work. I am beginning to lose faith :-( Thank you again. Bill
Hi Bill- I just read on the net about Tens therapy and Pens therapy for pain reduction. Tens is electrotherapy-pads attached to areas that give mild electro stimulus to nerves. There are even small portable units that can be worn under clothing. Pens therapy does the same, but with small needles to get closer to the nerves if more stimulus is needed. I don't know alot about it. There's a lot of info on the net, though. Best of luck in your search for a solution. Seek and ye shall find. Jeanne
NO IMPROVEMENT ! IS IT ONLY ME ?
Interested to hear if anyone else is similar. Nearly 2.5 years on . Read all your fabulous stories of wonderful improvements . But not me . FATIGUE, max 4 hours up , then to bed , rest & up 4 hours & rest . Giddy , unsteady. If car passenger , 15 min max . Conversation, telephone, knock me out . As no real improvement up to now, feeling rather sorry for myself, thinking is this it ?
Good to hear from you . David.
No, David, it certainly isn't. As you know, after five years I still have post stroke fatigue in the morning requiring rest and I sway and wobble every so often. Fortunately, my partner tends to offer 'tough love' so this morning not being an exercise class day I was asked was I going out for a walk. I have not long returned from that....only round the block but the different gradients involved are a challenge. I've also done a bit of hoovering and wiped the coffee table down.
I'm not claiming sainthood, but I make myself do things despite now being 78. I use my weak arm and hand as much as I can, despite continuing clumsiness. Low moods are inevitable, but try to rise above them. When I first came home I could do nothing for a good year. It's only in the last year that I feel I now play a reasonable part in looking after myself and our home. Every little step forward is hard fought for, but not trying is worse than trying and failing. Please cheer up.....after all, you are still alive.
Hi David, not just you. It can be demoralizing. Other's stories of recovery can be encouraging in the sense that they remind me of what is possible, but likewise can be discouraging if I say why not me? Most of us will recognise that every stroke is different and there is no standard recovery experience. For me I have had no dramatic recovery.I have no function at all in my left hand and no real voluntary movement in my left arm. However I do know that even now after 5 years, things are still possible. Keeping the encouragement going is very hard, I agree, but it has helped me to keep an eye on what is possible even though it is not yet actual for me. Fatigue has reduced somewhat over the years but still stops me even now.there is, at least for me a daily balance to strike between accepting myself as disabled which I am, and continuing to work for recovery, which I do. I don't now expect to return to pre stroke functioning, but I continue to hope for little things. It is without doubt the hardest thing I have ever had to deal with, and is on a daily basis. So I can't give you a cheery bit of encouragement, but nor can I say "this is it" things change, maddeningly slowly. But I can offer solidarity- Some days it is just hard, and there's no dodging it- even after years.
Hope you can get some better days soon.
TONY
Dear David
i am a major culprit in telling about the recoveries I am blessed with. We need to be positive. And as recovery is so slow it is easy to think nothing will improve. But it does. Painfully slow. You are at the end of the beginning. About two years is typical, at which time the plasticity will ease. Vegetate and things will not improve. Keep trying and it is fabulous when a recovery happens.
a certain pandemic has affected everyone, and us SS are sort of overlooked. But maybe the pandemic will end in the next twelve months or so.
I read your issues and identify with most of them. But what I read from you is how well you have identified your problems and how much you try to overcome them.
you know what rest you need. Therefor you can try varying things. Personally, I will not go to bed in the day. If things are really bad, I will lie on the settee.
As the pandemic eases, then help will slowly increase.
in summary, no it's not the lot. Keep at it and things will happen.
colin
Hello David Im having a bad day today. I have overdone it this morning and have come to a grinding halt now.We usually go for a walk in the afternoon but I know I cant I am going to sit down all afternoon and hope that Iwill feel better. My stroke was 2017 and I have improved in some thin gs but fatigue isnever far away. Hope you soon feel better. Norma.
Sorry to hear you have had a bad day hope tomorrow is better with kind regards des
Hi David-- One thing for sure "this" is never "it". Law of the universe: everything always changes. We do have some say in the direction that change goes. Keep positive. Hold an image in your head of what you want your next step to be. Develop your own mantra, and repeat it constantly to yourself. This will program your brain. My mantra is: "Every day in every way I'm getting better and better, stronger and stronger." Just because we are not how we were twenty years ago doesn't mean we can't improve what we have now. I am like Colin in that I never sleep in the day time if I can help it, as it makes it hard for me to get a good sleep at night, and that affects the next day. I do, however, lay down for a rest after lunch for about 1/2 to 1 hour, listening to the radio and doing crosswords. I'd like to stay right there, but I make myself get up--even if I only sit and read or knit. I am fortunate in that I am able to go for a walk every day, which I force myself to do even though I'd rather sit and have tea. I don't walk on Sunday, as we have church. It's interesting that I feel more fatigued on the day I don't walk. You'd think I'd feel rested. I think pushing myself physically gets more oxygen to my brain and that helps the fatigue. However, if I do too much, that's no good either, and I get fatigued. Finding the right balance is the trick. I don't know if you walk. If not, there may be some sitting exercises, like lifting 1-lb. weights over your head to give you some aerobic exercise, which may get more oxygen to the brain. Just throwing things out there. No matter where we are in stroke recovery (I'm at 3 years) we all have our "poor me" days. It goes with the territory, but we have to fight it, push it back, don't let it win. I'll remember you in my prayers tonight, David. Jeanne
Hello David, it may seem like wonderful improvements on the page, but for me, I'm still aiming for those 2% milestones, and of course, there are days when I have exhausted my brain, and I have that regression to follow. The problem with vestibular impairment, which you will have because the stroke was in your cerebellum, it's almost impossible to switch that part of the brain off, that's why rest is such a default position for us. This is different from ataxia and asphasia where you can stop talking or use a good side to take a break from the weaker side. Cerebellar damage affects the ocularmotor, proprioceptive and vestibular function, which we use almost 24/7 unless supine in a dark room or meditating. From the moment you open your eyes, that whole system switches on, even if resting in bed having a cup of tea. You are looking around, moving when you drink the tea. I find it one of the hardest impairments to find rehibilitation exercises for, and to be honest, it exasperates me. And to make matters even more irkesome, we can do exercises but as soon as we stop doing those exercises, and say go outside for a "break", it's not a break because we're confronted with all that visual stimulus and movement that makes the impairment so difficult to manage.
I have been experimenting with visual tracking and pattern exercises (done in front of the telly!), as well as, different kind of movement to see if I can improve things. I think 2.5 years is a comparitively short time if you have been unaware of the types of exercises you can do in order to improve things. I have spent a year doing useless eye exercises recommended by the physio, that after further research, I discovered I needed to do completely different sorts of exercises. So, I sort of set myself back by a year, and only now, after the six month neurological plasticity has winded down its most productive period, am I able to focus on the probelms at hand. But that doesn't mean I can't make progress, I can make progress for the rest of my life, and should. Those dormant neurons can be awakened at any time of life after a stroke. It will be harder, and take more time, but it is certainly achievable.
NO IMPROVEMENT ! IS IT ONLY ME ? David says thank you for all you support - it is much appreciated.
Wifey perspective: David cannot do without an afternoon nap and it does not affect his ability to sleep at night.
He cannot walk very far, but can trundle backwards and forwards to his workshop and potter for 2 or 3 hours, but not every day.
Anything that requires concentration can wear him out, so phone conversations with his kids or sisters can wipe him out quite quickly. Mundane something and nothing chats with me are OK.
He has always had a tendency to over think and analyse things and this now combines with a certain level of anxiety which I believe is contributing to his current level of exhaustion. Personally I feel he could give the Mindfulness another go if only to give himself a break from the fearful thinking.
Thanks again to everyone, I know how much he appreciates you all.
Christine
Lovely to hear from you Christine.
anxiety is a so and so.
therapy is edging back in to society and I am sure most SS will benefit from most therapies. Relaxation. Yoga. Group meetings, all will help.
colin
Thank you Christine. Anxiety goes with the territory. As Colin says, support services are creeping back, but after a while we are mostly left to our own devices. There is a Life After Stroke Centre in Bromsgrove that offers all kinds of courses at a very low price, but I don't know to what extent they are functioning at the moment.
I also need a nap at noon every day and it doesn't affect my sleeping either. I also find a lot of conversation difficult and tiring and doing more than three or four tasks a day is beyond me. That said, I try to do as much as I can, even little daily household tasks. I cook and bake a lot and that is my salvation.
Hello Christine, I continuously overthink, and I am quite introspective. Before my stroke, I was the same. Afterwards, this has contributed to anxiety and fatigue, and I can vouch that mindfulness would indeed be ideal, if only we could switch off the thoughts. That's why I do Tai chi, it gives my brain twenty-minutes to reach a blank state that eases all that internal noise, but even then it takes about ten minutes to get to that point.
David has had a cerebellar stroke which means as far as I know from having had the same, our rehabilitation options are not well supported. The symptoms of cerebellar stroke are lumped into this mysterious thing called cerebellar stroke syndrome (two paragraphs are dedicated to it on Wikipedia compared to the large resource on the stroke page!), which doesn't really spell out the actual symptoms we have. If it helps, I have narrowed mine down to: nystagmus, stereopsis, ocularmotor dysfunction, proprioceptive impairment, hypometria, and myopia. This discludes things like dyspnoea and fatigue which I have also. But the first lot are cerebellum specific, although, can be found with other strokes. I mention these because it gives us a name to the specific symptoms and, therefore, a pathway to exercises that attempt to rectify the issues.
Finally, talking on the phone can be exhausting, and it is extremely common for cerebellar stroke survivors to struggle with recognising patterns, this is why many cerebellar stroke survivors who were previously good at maths, have trouble afterwards. There are patterns of lexicon in conversation that we have to join together to get the whole picture of what is being said. For example, I have trouble working out instructions or processes, if I am fatigued, ask me to set the timer on the heating system, and I just can't get my head around it.
I think David will progress, I think 2.5 years is maybe the beginning of getting over the first hurdle and making good steps in the future. We always appreciate his contributions here, and look forward to his posts.
Hi Jeanne
Many thanks for your response. I have both a Tens machine and also the pen device too. Alas they don't alleviate my pain. Bill
Hi Bill - It’s me, Jeanne, again. I thought of one more thing I wanted to mention. It’s been a while, because of this site undergoing changes. Have you looked into hypnosis to alleviate your pain? Dr. Laura Schlesinger mentioned on her radio podcast that it can be very useful in ongoing pain conditions, but says that it must be done by a good licensed phychotherapist experienced in the use of hypnosis for pain. Just another idea. My best to you–Jeanne
Hi Jeanne, thanks for getting back to me. It is something I have not tried hypnosis. I have tried a pain clinic with infusions, morphine patches, cbd oil in the past. I have recently purchased some more cbd oil for £140 to try that. Still waiting for the doctor to prescribe some cannabis spray for under my tongue, but you can’t hear from these doctors for 6 months, by that time he Hope’s you’re dead. If hypnosis does any good I will get back to you. Thanks. Bill.
H Bill
I had a stroke in November 2020 and the neuropathic pain kicked in around the 6 month mark. I have tried all medication, cannabis, oils etc but nothing works. My pain is down my full right side. My consultant has recently recommended trying a hot tub, swimming pool & hydrotherapy to ease symptoms. I’m just curious how you are getting on?
Cheers
Ian