I’m struggling at 17mths post stroke. Have been for a while but always hoping it’ll get better. Now it’s just getting me down. You know how for a lot of us things change physically in the months after stroke? Well, in many ways I’m a lot more functional than I was which is great. I can walk without any aids, I can use the stroke arm and hand almost normally now and it’s still improving. But the downside is related to pain and sensation which has changed a lot since the early days, more so since the Summer. A few mths ago, I was able to drive myself into town to go shopping twice in one week. That week was the best I’ve had and it felt like things were turning round for good. About 3 weeks ago, I was able to drive over to see a friend and went shopping afterwards and was out for 6 hrs. I didn’t even suffer for it afterwards😁 It was around August/September that the numbness in my leg, arm, face and back increased, so did tingling. Shoulder and forearm are tight, not stiff. Everything is back to feeling like sandpaper again although I expect that will change - it often does.
I know there have been good results for (central and peripheral) neuropathic pain using medical cannabis so I registered with one of the many growing cannabis clinics 6 weeks ago. I wasn’t expecting a miracle, but a reduction in symptoms would have been nice. Unfortunately, I couldn’t tolerate the THC even after bolstering it with more CBD. The clinic doctor told me it’s rare for medical cannabis not to work but at least I’ve tried it now and can rule it out as a pain treatment. I’ve been off it for almost 2 weeks and suspect it may have been helping a little because everything is feeling a little worse now, with today being miserable. I’ve never really suffered any fatigue up until now, either. I’m getting whacked out just getting up and dressed in the mornings. By the time I get downstairs, I’m ready for another rest. Previously, I’ve been able to cope with a few hours activity in the mornings and I tend to rest more in the afternoons, but never sleep. I always aim to walk at least a mile every day ( around the house mostly because I usually feel too rubbish to go out) but have only managed to achieve half of that most days for the last month. What a sad, unproductive life! I used to be so active, always out, always busy doing something. I’m well in myself. It’s purely that I feel very uncomfortable physically. I generally sleep well, but I didn’t last night so that’s probably why I feel like I do today.
Anyway. I decided to contact a private neuro physiotherapist this week. I would never be able to afford this if it wasn’t for PIP so I’m blessed to have the option. I’m having an assessment at home next Friday. I was told it’s normal for that tight feeling in the arm to happen as time progresses but that it can be eased with correct treatment eg soft tissue massage/ manipulation. I was so happy when I heard that because it’s the tightness that is the biggest bug bear for me. I can cope with the other stuff generally but when it’s all happening together, it can become too much.
hmmm, bummer. I would just keep moving the arm especially, and gently if you like, but you may have to “develop” it for things to feel at their best, good luck, Roland
Thanks, Roland. I use it pretty much normally but would love to chop it off sometimes! When I walk, the tightness and heaviness makes it feel like I want to lean backwards. Ugh!
Good Morning Trace, sorry to hear that you are struggling at the moment.
Hopefully your appointment with the neuro phyphysiotherapist will bring you some relief on Friday. I have always found the neuro physiotherapists to be very helpful and informative.
I was a cannabis user before my stroke. A lot of googling was done and it seems like a grey area, either it may make you have another stroke or have no impact. There didn’t seem to be a clear yes or no. I suspect because it’s not widely ‘available’ and so any or most research is just not robust enough.
And any or all research will or may be heavily ‘under the thumb’ of the government of whatever country it is being researched in…
I miss it tho and think I’d massively benefit from it now post stroke. I just don’t have the courage to try it again
I do have to laugh at the advice re alcohol post stroke from actual medical professionals. ‘In moderation’
It literally kills brain cells
Sorry just to edit to clarify that wasn’t a jab at your in moderation comment. More than cannabis is demonised and alcohol, something scientifically proven to be toxic to your brain, is fine in moderation
@Trace57 sorry to hear you’re struggling at the moment. The stroke journey is definitely a bit of a rollercoaster.
I wonder, if fatigue etc is new to you at the level you describe, whether you should get some bloods checked to see if there may be another cause of it.
I hope the neuro physio can help with the pain symptoms. They are very debolitating when you get little relief from it.
Hope you sleep better tonight & things settle for you soon.
@matt_d13
I remember trying cannabis when I was in my 20’s and I didn’t like it. I was more of a binge drinker in those days. But the alcohol stopped when I was 5 months pregnant with my son who paid a high price for my bad habits. He ended up with alcohol related brain damage which wasn’t diagnosed until he was 20. Of course, these days it’s well recognised that women should avoid alcohol when pregnant but 40yrs ago it wasn’t. It’s a mixed bag with cannabis. I worked in the mental health sector for around 10 years and there were plenty of young adults who’d smoked pot and then developed schizophrenia or psychosis. But that’s down to the THC. It seems there’s been considerably more research on CBD in more recent years which points to it being neuroprotective. I’ve been using CBD daily now for around 4 mths and it definitely seems to improve my mood. It was the medical cannabis that caused me problems. I was reacting badly to the THC even at very low dose but I kept going for a month in the hope my body would adjust to it but it didn’t. That was a clear sign to me to stop. The FSA have recently advised a reduction from 70mg to 10mg CBD daily for safe use, claiming that heavy use over a lifetime can lead to liver and thyroid problems. However, I personally think that risk needs to be balanced against the damage that conventional pharmaceuticals can do in much less time, especially the cocktail of drugs being pushed onto many these days. Using good quality, third party tested natural CBD has to be safer than putting synthetic chemicals into our bodies.
Thank you @Susan_Jane
I’m looking forward to Friday. It’ll be so helpful to talk with a medical professional who understands the Neuro side of stroke and who is working with stroke survivors daily.
Happy Remembrance Sunday to you, too.
Thank you @Mrs5K .
I had a good sleep last night and am feeling better than I was. Not fatigued like I have been. Maybe the medical cannabis has been working its way out of my system I’ve been busy for a few hours and am definitely feeling more positive. Maybe it was cathartic writing it all down, too! But I was also thinking about a blood test just in case. My last one was a year ago.
That was very interesting! Thanks for sharing.
Absolutely agree that THC can probably cause mental health problems for some.
Same way I’d agree alcohol can make people lose all their ‘senses’ (first hand I’ve seen some very nice people turn not so nice when having too much to drink…)
I’d be curious what the research looks like for marijuana in 40 years!!
What way did THC negatively affect you, if you don’t mind me asking?
Hello @matt_d13
It took about 2 hrs before it kicked in. Each time, I noticed a sort of heaviness/pressure in the lower back of my head. If I was standing, I started to feel a bit unsteady and knew I had to sit down. Then, this is the weird part, my teeth started chattering badly like I was shivering but I wasn’t cold. I felt very unwell but kept telling myself it was only temporary, which it was. My husband likened it to a ‘whitey’? (He knows about these things😆). It always lasted about 20mins after which I felt very relaxed and sleepy. If I was listening to music, I would start to feel slightly euphoric which I admit was nice and there was like what I can only describe as a very pleasant pale blue opaque haze in my head if that makes sense🤷🏻♀️ If it wasn’t for the horrible stuff, I could’ve been tempted to stay with it but it wasn’t doing anything much for the pain so would’ve defeated the object. The doc wanted me off it straight away but I wanted to experiment with higher doses of Cbd to see if it would cancel the nasty bits out. He was happy for me to try but wasn’t surprised at my next appointment when I told him I’d decided to stop it altogether.
It has amazing properties that helps post stroke… If the healing power of the sun is my n1 then cbd+ is n2. It’s just treated me to a much needed good night’ sleep
@matt_d13
Just a thought. I’m guessing the most likely reason cannabis might cause a stroke would be if it’s smoked, with smoking cigarettes posing the same risk. Also, THC can raise BP ( doesn’t mean it definitely will) but probably not to dangerous levels if BP isn’t high to begin with. I’ve read that CBD can either raise or lower BP but it seems to be dependent on individual response. There’s still so much stigma around it and also much still to learn but you could possibly have a conversation with your GP? At least one of the docs at my surgery is pro but there are others who are against. I was very anti until recently when I did the research and learned there are definitely some good health benefits.
I’m with @pando on this one.
Fear can be the biggest barrier. For example, if anxiety is a problem, and cannabis can fix it, it’s got to be more beneficial for your body to be calm than in a state of anxiety. Conventional meds can help but ultimately, they can also be harmful and a pain to get off of. Knowing what I know now, I wouldn’t hesitate to use cannabis if I could but I wouldn’t smoke it.
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I’ve been busy for a few hours and am definitely feeling more positive. Maybe it was cathartic writing it all down, too! But I was also thinking about a blood test just in case. My last one was a year ago.
