AIBU to consider private medical cannabis for severe nerve pain?

I looked up the current cost of Epidyolex, the medicinal cannabis formulation (no psychoactive ingredients) for epilepsy - it’s £850 for a 100 mg/ml bottle. It’s reckoned the annual cost privately, depending on weight is £5,000 - £10,000.

The NHS gets a confidential discounted price.

Look at “nerve flossing” exercises- I first saw them on instagram & they are life changing marvelous simple movements specifically to help nerves.

i had arm/shoulder issues mostly from aging + side sleeping & nerve flossing sorted things pretty quickly.

I also have osteoarthritis in both thumbs, shoulders, & hands and these exercises have sorted it all out. Gp & physio gave strong pain killers & advised all these objects to buy, but nerve flossing has also almost completely sorted these issues too & reduced inflammation in my thumb/hands dramatically & quickly. Quite wonderful

also YANBU to try medical cannabis- give it a go.

We could get it for free on the NHS now though, seeing as it’s been agreed she meets the threshold in the Nice Guidelines. (There is one on the use of it for severe epilepsy like Lennox Gastaut syndrome, which DD1 has)

One excuse used in the past by consultant neurologists for not prescribing it, was the lack of clinical trials. I pointed out that polypharmacy is common for people like DD1 with severe, drug resistant epilepsy. They have admitted to me, clinical trials are only ever done on one drug at a time, yet neurologists are routinely prescribing 2/3/4/5 anti epileptic drugs together for patients with severe epileptic encephalopathy; and they have NO idea what side effects those will have in combination.

I accept that neurologists are doing their best for their patients, who could die at any time and have poor quality of life with uncontrolled seizures; but it’s hypocrisy to say we can’t prescribe cannabis due to lack of clinical trials; but we can prescribe five drugs together, and we have no idea what they might do, because there’s no clinical trials!

It’s all about money!

So I went ahead. Was prescribed gummies. I am starting on a quarter gummy and can build up to two whole gummies over a number of days. The quarter gummy is having virtually no effect. Maybe a slight effect. I will gradually increase and see what happens.

My GP wont even discuss bog standard supplements for the same reason.

Whatever works for you. Noone should suffer pain, if there is route out of pain.

Nowadays you can buy 10 grams for £60-75.

Do it. Well done for still working. My DH has severe eye nerve pain and hasn’t worked for 9 months now.

DD1’s consultant neurologist prescribes medicinal cannabis for severe epilepsy. She was going to go on it; but he decided a newer drug was more effective.

I had talked with her previous consultant about her trying it privately. They told me some of their patients did that, and it cost about £10,000 pa (ten years ago). Like a pp, we could not buy it on the streets, because we’d get struck off!

I took medical cannabis for chronic back pain. Mine was drops you put under your tongue. I didn't feel that much except mildly nauseous from the taste. It didn't do much for me but there are loads of success stories. I think pain and sleep are very unique, unfortunately it’s loads of trial and error. But do check whether you really need to buy those extra things.

Living with severe nerve pain while trying to balance work, sleep, and daily responsibilities must be incredibly challenging. It is clear that you have taken thoughtful steps to manage your symptoms and are carefully considering every option with your healthcare team. Wishing you the right support, effective treatment, and some much-needed relief from the pain and exhaustion.

Managing constant nerve pain alongside disrupted sleep and daytime exhaustion must be incredibly challenging. Hopefully, with the right specialist guidance, you can find a safe and effective way to improve both your pain and quality of life.

I've found medical cannabis helpful for managing nerve pain. It's great that you've got a prescription and are seeing some benefits. For me, considering options like copd cannabis management has been eye-opening. This approach often involves consulting healthcare professionals, so keep that in mind. It might be useful to discuss it further with your GP to explore how it can fit into your treatment plan.

I have it prescribed for peri-meno symptoms and find it really useful. I have a vaporiser with flower and use Sativa during the day to help brain fog and Indica at night to calm anxiety and have deep sleep. Interestingly, the Indica packaging is the only one that has the do not drive notice on it. I originally used an clinic with expensive monthly charges (Releaf) before switching to a better value clinic (Medicann). I have used the oil drops in the past but found the dosages unpredictable, for me it can take hours to kick in and can hit hard. Using flower only, it hits within minutes but much more mellow and slowly eases off over an hour or two. I can imagine it would be great for pain relief.

@Shrinkhole understood. I think MC is something I will try if and when I have exhausted everything else. I have a few explorations happening next month on NHS so something might be revealed that might be treatable with something more standard but if nothing is revealed then alternative treatments is a reasonable option I think. The worse thing about chronic pain is how it messes with your head. It's always there.

Also have a look at spinal cord stimulation. Excellent for pure nerve pain .

I'm wrong. I spoke to his mate this afternoon, his GP gave him a letter of referral to a private clinic. He pays for his prescription. Sorry for giving my two pennorth when I obviously didn't have a clue what I was talking about.😳

Some GPs do. NE England.
My DH's workmate has just begun with flower, vapes and oil for chronic knee pain. NHS prescription. His usage will be monitored closely, he was prescribed it after exhaustive trials with other forms of pain relief didn't work.
It's early days yet but he has said he's able to get some sleep at last.

I think most NHS Drs would likely not know much about it and/ or be reluctant to discuss it. This is not a licensed or NICE recommended treatment for any condition so it does not feature on any curriculum or CPD. The evidence base is poor for most indications so there’s not even much reliable evidence you can look up even if you were minded to. An NHS Drs can really only say ‘this is at your own risk/ discretion but thanks for telling me’. If a person had a history of psychosis or a high risk for that I would tell them not to but otherwise I genuinely don’t have any basis on which to advise. If any other Drs do I don’t know what they are basing that on.

Thank you. That is very useful. I mentioned it at the NHS pain clinic and they seemed to know less than me. I will discuss with GP if I want to pursue.

I am also interested in pursuing hypnotherapy as I had great success dealing with a phobia and I know chronic pain is something they try to help with. I might try that first and then MC.

@IsThisGoodIdeaOrNot I was wondering if you are still benefiting from the MC. I am in a similar situation and also a bit wary about the possible impacts - grogginess etc.....

Op I am glad that you are sleeping better after trying the medicinal vape. As long as you are sensible with dosing and don’t drive while under the influence of it you will be fine. Marajuana gets a bad rap on MN which is not really deserved, it’s much safer and healthier than alcohol which is a socially accepted drug that can kill you. No one has ever died from a weed overdose..

Given the amount of pain you're dealing with, I don't think it's unreasonable to explore all of your options. It sounds as though you've already tried a lot of the usual approaches and are being sensible about weighing up the pros and cons. You should definitely discuss it with your consultant, but if something has the potential to improve your sleep and quality of life, it's understandable to at least consider it. Hope you find something that gives you some relief. ❤️