In a quandary and overthinking as usual!

About stroke Medication and treatments
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Hello lovely people.
I’ve not posted for weeks. Wish I could say it’s because I’ve been out enjoying the sunshine but it looks like Summer may have passed us by this year.

Around 10 weeks ago, I made the decision to trial
either CBD or Amitriptyline to help with neuropathic issues. My first choice was CBD but unfortunately, it interacts negatively with Clopidogrel. I asked the doc if I could change to a different antiplatelet but he said it would have to be my stroke consultant who made that decision. He wasn’t happy about the CBD because it’s not a conventional medicine and ‘not what he’s been taught’. I pointed out, nicely, that when conventional medicines don’t work, we sometimes need to think outside the box. In the meantime, I agreed to try the Amitriptyline and the doc wrote to my stroke consultant, who said I could change to Aspirin and Dipyridamole but that it may not be as well tolerated as Clopidogrel.

I really do have an aversion to pharmaceuticals and before the stroke, I was drug free, apart from a tiny dose of Escitalopram which is another story for another time but has possibly coloured how I feel about putting toxic drugs into my body, drugs that docs often know very little about even though they say they are safe. Lived experience can tell a different story.

Coming back to Amitriptyline. I was taking 10mg at night and wasn’t expecting anything, to be honest. After 5 or 6 weeks, a friend remarked that I seemed a lot more cheerful and hubby said I seemed to be having much better days. I had to agree. Although I usually sleep well, I was getting a good 7 or 8 hours of uninterrupted sleep with no waking to use the loo like before. I was feeling positive and motivated even though there was no real noticeable change in the neuropathic discomforts. I reported back to the doc and he suggested doubling the dose or even tripling it if I wanted. I doubled it. After 5 days, I was starting to hallucinate at night. I was waking up and seeing things that scared me. They weren’t nightmares, I was awake. I decided any drug that can cause that to happen is mind altering and definitely not good. I tapered off over a couple of weeks. The hallucinations seem to have stopped but now I’m back to feeling really rubbish again.

I’m having to weigh some things up in my head. Was the Amitriptyline, even at such a low dose, bolstering serotonin/dopamine levels in my brain? If so, will the positive effect remain at such a low dose or will it need to be increased as tolerance increases?
Would upping the dose of Escitalopram and disregarding Amitriptyline altogether have the same positive effect? (I’d prefer to take one small dose of one or the other).
Do I try the CBD? (Pros: Research is showing promising results for neuropathy. Works in harmony with our body. Do not have to keep increasing dosage for required effect. Cons: No guarantees it will work and will have to change currents meds to accommodate it safely).

Amitriptyline can be difficult to stop, especially if used long term, even at low doses. Ditto Escitalopram. It’s still unknown how these drugs actually work, which, to me, is scary. But, does it even matter? I’m 66 and 13mths post stroke. The only thing that really stops me from getting out more frequently is because I feel rubbish. But for 2 or 3 weeks, I was doing a lot more and would’ve been out visiting friends if our automatic car hadn’t been stuck in the garage needing work done.

Am I making too big of a thing about this? What would you do?

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Hi @Trace57

I don’t think your over thinking (because I find that a daft judgement normally by others - you analyse as much as peace of mind needs)

You’ve certainly packed some data in!

Your “cons” for CBD seem to me to apply to everything so I’d discount! Things like Amitriptyline have a very patchy performance record for neuropathic pain

1st CBD often gets discussed as if it were ‘skunk’ cannabis weed - it’s not as it (typically) has the THC removed. It binds to receptors in the brain - it’s simply another compound. The fact that it’s source was involved in the political machinations of the opium wars is somewhat irrelevant and an accident of history.

There’s a lot more on medication and alternatives in the CPSP threads like this one - but then you’ve active in that one so is there some other angle your trying to explore?

If it’s just the closing “what would you do” I would continue to research around the topic at the same time as trying each possible avenue so I would swap my platelet meds and try CBD for a couple of months and I would try other pharmaceuticals before or after for a month or three and I might after that if still searching try combining them. I think the GP who goes on the back of “it’s not in this textbook” for a topic so out of standard medical practises ability to manage maybe not the best companion on the journey

@Nigelglos opinion would be 1 i’d listen to as well

Caio
Simon

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Hello Trace,

I have little to contribute, I’m afraid. But I am a fan of CBD and take a few sprays under the tongue every night. As you state, CBD is a very natural thing to take because we produce our very own CBD in our own body. It’s called our ECS, or EndoCannabinoid System, discovered 20 odd years ago. That’s right, you are already taking CBD !! Our bodies are full of CB1 & CB2 receptors; so we’re geared up for it. In fact, you might like to read this article: (though something tells me you already are aware of contents)…

I have CPSP, but I attribute it to a process of innervation, so I take nothing that could interfere with this process. My Chinese Dr. reminds me “pain is your friend”. Of course I have to take BP meds, and they certainly contribute to peripheral neuropathy, but that’s another story. As far as my recovery is concerned, there are plenty of aspects that involve thinking outside the box… use your intuition, and do exactly as you wish.

Good luck, Roland

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I have no knowledge of CBD oil at all although i know stroke survivors who have taken it. I don’t know how they’ve got on with it.

If the small dose of amitriptyline made such a positive difference which was also noticeable to others if it was me I’d try that again.

Ultimately only you can decide what is right for you.

Hope whatever you chose works for you.

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Part of the context is that ‘cannabis’ is a loaded term bringing in emotional components of decision making that don’t deserve to be in the mix. Shades of 60s style legality?

CBD has nothing to do with psychotropic experiences. They are caused by THC.

CBD oil contain compounds that naturally match receptors in the body so also occur in other things that we ingest and are manufacture by our brain, muscle, fatty tissue and immune cells.

The baggage is unhelpful. Are we, for instance aware that many flavourings are derived from crude oil via the petroleum industry?
Do we avoid magnesium because it is added to aluminium in the aircraft industry or iron because it’s used to make bridges and reinforcing rods in concrete that rust and are the cause of building collapse?

3¢
:slight_smile:

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Thanks Guys! @SimonInEdinburgh @pando @Nigelglos @Mrs5K
You’ve all helped😁

I can’t think about what I have as cpsp. It may or may not be. It probably is. But every time I hear that term, it fills me with a sense of despair and hopelessness and I suddenly feel worse. Oh, the mind is a powerful thing! I don’t have any pain, only uncomfortable sensation which is triggered by nothing at all that I’m aware of. Movement helps - improved blood flow maybe? Walking has vastly improved since I totally stopped using the stick a few months ago. I can use the stroke hand almost as well as I did pre stroke even though it feels nothing like it did pre-stroke. I’ve been off the Amitriptyline at least 2 weeks now. What I’ve noticed is that I feel worse now than I did before I started it. Maybe it’s because it started to interfere with the process of innervation @pando :woman_shrugging:t2:Maybe I’m just having a run of bad days. Something feels ‘off’ in my body - no appetite, bit nauseated, extra tired. Could just be the after effects of the Amitriptyline :woman_shrugging:t2:Hopefully it’ll settle down. Speaking to the doc on the 29th (for what it’s worth).
@Mrs5K I did consider continuing with a lower dose of Amitriptyline but my concern is that I may need to up the dose as my body gets used to it. If all it’s been doing is improving my mood, it might be better to up the dose of Escitalopram instead and forget about Amitriptyline altogether. ( I’ve not had any problems with Escitalopram, other than trying to come off it).
@SimonInEdinburgh @Nigelglos I feel trapped where Clopidogrel is concerned. The alternative -aspirin with Dipyridamole - seems to carry myriad problems, although that doesn’t automatically mean I’d be affected, of course. I know there are risks with all meds.
I’m so sorry @Nigelglos that cpsp is so dominant in your life and that it seems to be progressing. I really hope you can find something that will work for you… I believe there is an answer but it’s yet to be found. I bought some of this a while back: https://www.pureorganiccbd.com/product/full-spectrum-cbd-oil-1000mg/ Obviously not tried it yet - I’ve got to be brave and change the Clopidogrel! I’m really not surprised more people are using CBD for pain relief. At least it’s safe when bought somewhere reputable. The NHS are useless on that score. In 2011, my daughter was being given Fentanyl in UCH. She started having fits. The docs wanted to give her something to stop them. I pointed out that Fentanyl can cause fits and they didn’t even know! The Fentanyl was stopped. No more fits. Also, before Clopidogrel is continued after ischaemic stroke, it’s recommended that a blood test is taken to check that the liver has the right enzymes to metabolise it properly https://www.nice.org.uk/guidance/gid-dg10054/documents/514-2
My GP didn’t know about this. I don’t know if I had the blood test. I know I have a permanent light under the skin rash from both knees down which I think is due to Clopidogrel. The docs are unconcerned about it. I’m concerned about what’s happening to my blood!
@pando Thank you. I’ve got hope for the CBD. It makes so much more sense than using synthetic drugs. I’m always trying to think outside the box. It’s scary how many of the medics of today have lost the ability to think for themselves. It’s little wonder so many of us have lost trust in them. We’re pretty much on our own.

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You certainly have the ability and confidence to think for yourself. Thanks for sharing, and I hope you continue to progress as your thinking develops and evolves. Well done, ciao, Roland

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I have the same reaction as you on this. Again I’m not saying I have or don’t have it, but I accept numbness, paraesthesia, stiff muscles, unexplained aches as a by-product of inadequate innervation of muscles, and poor somatosensory performance.

Roland

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Good luck. Definitely a good idea to try different things to see if they cause changing your condition and then you can target some more designed tests to try and establish cause and effect :slight_smile:
:slight_smile:

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Hi @Trace57
Stroke recovery is a journey of discovery - one where the guides are polarised in their vision and speak a foreign tongue.

You’re certainly better informed than many :slight_smile:
I share your despair in the performance of the majority of the med professionals that I’ve met.

I was at a stroke meeting yesterday where a fellow #StrokeThrivers was describing a conversation he had about the aneurysm that cause his and the person in his conversation said “oh yes I’ve heard of them but I don’t really know the thing about them”: That person was his GP!!!

With respect to CBD and clopidogrel - my understanding is that the effectiveness is lowered. So that doesn’t suggest any pathological interaction merely a loss of efficacy or in need to increase dose. Maybe if you took the Clopi before bed or took a 75 mg aspirin every other day or… You would obviate any dip in effectiveness?

As it happens I have blood works analysis with the GP this morning precisely for liver kidney functions after changes in my meds last month and vitamin level verifications - so my GP scores on that one although if I wanted to be sure about medication knowledge I would be talking to my pharmacist rather than my GP - GPs tend to be gatekeepers who triage out of the more expensive interventions those that can be treated with paracetamol and sticking plasters.

I would echo Nigel’s comments on CPSPS - it’s a catch-all phrase that basically means we don’t know the mechanism for the symptoms. If you haven’t had a stroke it’s called complex regional pain syndrome. And I think the word pain should be understood in later terms as a misfiring of perception so it may be paresthesia as much as burning or freezing or crawling ant syndrome.

With a viewpoint that something in the nervous system is not detecting transporting and responding appropriately we can then ask the questions “which of the elements of sensors and analysis and transporting components of say skin, nerves, brain- central nervous system / peripheral nervous system are dysfunctional?”.

Typically in systemic 'bugs’ that are difficult to connect cause and effect there is more than one misfunction in more than one place and therefore simplistic point of failure fixes don’t work. I would suspect something similar is happening cases where the fallback label of CPSP is being used - that’s your feelings while not pain possibly qualify for a bucket labelling (all of which is not helpful for solving your conundrum but might explain why you are having less than clear conversations leading to a speedy and satisfactory conclusion

3¢
Caio
Simon

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There’s definitely some added complication, going on Nigel. Thalamus is my guess. Are smells clear? How about smells through your right nostril vs left? (which use R then L hemisphere of brain). As you probably know smells do not go through the thalamus switch box. The lycra sleeve seems like an excellent idea. I would run it through the good arm first to acclimatize?

I wonder what it would be like to swap our condition(s)? We’re both hard workers, clever, etc. but, would we come up with similar conclusions?

Good luck, ciao, Roland

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this has set my little mind a thinking - i have been on 20mg Escitalopran sinc3e 06
dont thinks CBD would be for me i have hated even the smell afer i took a whitey and spewed all over myself ,and that was nearly 40 years ago
but this Amitriptyline 10mg interests me is it gives a boost to serotonin/dopamine levels and will lighten my mood does this really work ?

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@cuddyhung

Sorry this so long but I’m trying to give some context!

I tried weed when I was in my early twenties and it made me sick, too. I can’t stand the smell of it either; skunk is the worst!! However, CBD is different and it seems to help with anxiety, insomnia, neuropathy and other pain types. Not that I’ve tried it yet so I can’t personally testify to any of that. But if I go that route, I’ll be making sure I use something pure and organic and third party tested as not all CBD is equal.

Re Escitalopram. You already know how hard it is to come off it. I’ve been using it since about the same time as you. I went on it very reluctantly because the doc said I was going to end up in hospital if I didn’t. I didn’t want drugs, I wanted a resolution to the circumstances that were causing problems and making me depressed. But that didn’t happen for a number of years so the Escitalopram got me through that time with an unexpected and very welcome benefit - it stopped all the anxiety and panic attacks. Life started to improve around 10 years ago. (Before that, I’d dropped from 20mg to 10mg and finally to 5mg). Since around 2009, I’ve tried to quit the Escitalopram 4 times. Ive been on a minute dose - 5mg alternate days - for around 3 or 4 years now. The last time I tried to quit was prior to that and I’d tapered off from 5mg a day to 5mg a week over 2 years. Within a month of taking that last dose, the anxiety hit full force, worse than it had ever been. I couldn’t stop crying, I couldn’t sleep and all I wanted to do was climb out of my body and run away from it. The doc said I was relapsing. I knew I wasn’t. If I could’ve held on for another few weeks, I think I would’ve finally cracked it but for me, it was unbearable. So, I started taking it again and have accepted, for now, that I never want to go through that again and will carry on with 5mg alternate days indefinitely. I haven’t had any anxiety or panic attacks on such a small dose which makes me think I wouldn’t be having them anyway without it.

Re Amitriptyline. Please - research it. And pay particular attention to the problems people have when they try to quit. It seems to me that any of these drugs that mess around with dopamine/serotonin and are used for a long time will be problematic when you want to quit.
I definitely felt better in myself after 5 or 6 weeks of starting them but I hadn’t been aware that I needed to feel better, if that makes sense.

Hope this helps in some way. It’d be so nice not to even have to think about any of these things😳

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my problems came from Abuse i suffered when i was 8 , i buried it very very deep and didnt remember , then in my 30s i was triggered and it all came back ,my big sister cleared out abroad to work as a nanny when she was 16 ,i found out why later , unfortunately my wife was an enabler she tried to understand and was sympathetic i didnt need that , i needed a kick up the Ar*e , fortunatly my wife had a friend like that and she saved me (and has done for the last 18 years) i had thatgoing on and was getting bullied at work -by my manager he made it his lifes mission to get me sacked tried 4 times i was suspended twice for 3 months and all of his crap came to nothing , i eventually left that job 10 yeaes ago on ill health retirement with 25k payout
ive not had a major eoisode since then ( he retired a month after i did) ,quite a few minor ones ,it came back in january this year,but my petal gave me 12 weeks then went into action ,and im fine again

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@SimonInEdinburgh @pando @Nigelglos

Thank you for your replies.

I do remember reading this, now you mention it. So I’ve been looking into it a lot more. The more I delve, the more I’m learning that Clopidogrel isn’t a very nice drug ( are any of them ‘nice’?) and that there’s still a lot to learn about how it works and what can make it more or less effective, but I can’t be thinking about that too much at the moment.(The alternatives are just as bad).
It would seem that the interaction between CBD and Clopi is possibly dose related, with higher doses of CBD reducing the efficacy of Clopi (theoretically). Honestly, my head is swimming with info about the enzymes of the CYP450 family, inducers and inhibitors and how consumption of different foods can complicate the whole drug metabolism process! Throw body weight, genetics, and other co-morbidities into the mix and now my brain is frazzled😳

I had a consultation yesterday with the pharmacist at the local Boots. I explained that info on the net is conflicting. She replied that the only reliable drug interaction sites are those which have been validated. Fair enough, but I’m not only looking at drug interaction sites. I’m looking at limited studies and research which are pointing to possible problems. I guess unless these problems are actually validated, there’ll be no mention of them. However, two sites did comment. 1. Drug Bank online : Moderate interaction. Metabolism of Clopidogrel can be decreased when combined with CBD. 2. Health Central: Clopidogrel may not work as well, or at all.
Back to the pharmacist. She found no interactions on her validated site. She said it’s safe to take the CBD, that there’s nothing to say it’ll affect the efficacy of Clopi. Advised me to start with low dose and low strength to see how it affects me and if ok, to build up from there. She also said I should be having regular blood tests regardless, to monitor how well the Clopi is working. I nearly laughed - the only way I’ll get a blood test for anything is if I ask for it.

Anyway. I have this bottle of pure organic CBD by my side. It may or may not work but I should at least try it. At the moment, I’m still erring on the side of caution. Hubby says he’d have started using it months ago. I’m driving him nuts with all my procrastination. Speaking to a GP next Monday who’s known me for 25yrs+.

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I hear what you’re saying about the abuse. Similar happened to one of my brothers’ and he remembered in his late thirties. By then, the quagmire of his life had grown so deep with drug abuse and raw emotional pain that he ended it at the age of 42.
Sounds like life has been pretty challenging. But on the upside, you’ve always pulled through and you’re still here to tell the tale😁. I hope that better days continue for you.

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Glad I’m not alone on that score! I’m trying hard not to think of any of it in a negative way, rather, looking at possible solutions to help solve or reduce a problem. It may or may not take a long time. It may take forever but I hope not :grimacing:
I decided to stop Clopidogrel altogether. I did a ton of research on it and didn’t like what I found. Add to that a very low absolute risk reduction of between 0.9%-1.9% for secondary stroke - where’s the real benefit?? I also did a ton of research on other anti platelets and there’s only marginal differences in risk reduction between them in reality. So for me personally, the risks of taking an antiplatelet far outweigh the benefits. I spoke to my GP about all of this and and he didn’t try to dissuade me. Day 3 of being Clopidogrel free and the rash on my legs has disappeared and my knees are no longer pink. Took my first dose of CBD Monday night. Taking it low and slow because it’s new to me. The only effect I’ve noticed so far is slight nausea which could be put down to the hot weather but is most probably a sign that it’s doing something. I must be patient. Very happy, as you are, to work with my body and the only way to do that is to take control ourselves.

Psalm 139:14
“I will praise You, for I am fearfully and wonderfully made; Marvellous are Your works, And that my soul knows very well.”

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Wow, Trace,

outstanding detective work. I love your style; methodical, bold, and forward looking. You deserve your success!

Ciao, Roland

Thx for the quote; here’s another one I need to be reminded of
1 Corinthians 10:13 God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it.

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