CBD oil and sleep/anxiety problems

[Anna L]

Hello,
My gran has recently been diagnosed with MND and is struggling to sleep due to anxiety and breathlessness. I have heard CBD oil can help with these issues but I didn't want it to slow down her breathing which I have heard things like sleeping pills can do. Does anyone have any experience with this?

Thanks,
Anna

[LindaB]

Hi Anna L I've been using CBD oil for anxiety and disturbed sleep for quite a few weeks now. It has helped me but I am not breathless so can't say about that.
I use a company called 'Otherside' which is London based. They were also very informative. Sent me links to research etc.
Others may have a different view but it's definitely helped me.

[Ellie]

Anna L A warm welcome to the forum Anna, sorry to hear of your gran's diagnosis.

Anything which has a sedative effect can depress respiratory function above certain doses. But, there is a quality of life issue to be taken into account here and, if your lovely gran is distressed and not sleeping, sometimes side effects are a worthy trade off, within reason of course.

Medicine wise, Oramorph is usually good for relieving both breathlessness and, even though opioids depress resp function, it's given at a very low dose, it's fine. Lorazepam, another resp depressing medicine, is also routinely used in ALS/MND for this purpose. Her nurse can assess her breathing and advise.

To take a step back, is your gran interested in using NIV (NonInvasive Ventilation)? That can help the breathlessness and anxiety.

Love Ellie.

[Anna L]

Thank you both so much Linda and Ellie. It is actually my Mum who has been diagnosed but my daughter Gemma used my account to do my first chat and then signed my name

The whole thing is pretty miserable at the moment. Only diagnosed four weeks ago by a private neurologist after messing around with GPs through most of covid. Struggling to sleep, breathe, eat and walk and waiting on urgent referrals to an NHS neurologist, respiratory consultant and gastro consultant but nothing moving very fast! I think it is the lack of sleep that is getting to her most of all and making her quite depressed. Agree that I think NIV is probably the answer so will get on the phone tomorrow and try to get that appointment moving along if I possibly can

[Ellie]

Daughters, eh 😄

Oh that is hard for the 3 generations...

Some suggestions: If your mum lives near an MND Care Centre, ring them, explain the circumstances and see if they'll take an urgent referral from your GP.

Ring your mum's local hospice, they take referrals from people with life-limiting conditions (MND) and offer nursing support, amongst other services.

If you're getting nowhere, ring the MND Connect Helpline.

Yes, lack of sleep is utterly dreadful - I'd love to say she should take a sleeper or some CBD oil, but I don't know your mum's lung function.

Care centres: https://www.mndassociation.org/suppo.../care-centres/

Big hug to you and to Gemma. xx

[Anna L]

Thank you Ellie. That is so very helpful and really kind. I am so glad that we have started using this chat and I am going to set my mum up on it tomorrow too as I think it would make her feel less lonely and isolated.

Big hugs back at you. Anna xxx

[Lynne K]

Hi Anna, welcome to forums. I hope that your mum gets all of the palliatives care service in place quickly and is linked up to a neurologist’s clinic. Ellie has given great suggestions, as always and good look following those. Take care, Lynne x

[matthew55]

Hello Anna L and welcome to a bunch of strangers that are going to be your new friends. Ask anything about anything. 🤗😍😁😀xx

[denise]

Hi Anna

lovely to meet you and your mum.

love and hugs Denise xxx

[Heather R]

"Yes, lack of sleep is utterly dreadful - I'd love to say she should take a sleeper or some CBD oil, but I don't know your mum's lung function." (Ellie). Don't understand how to refer to someone's comment above. A friend is recommending CBD oil, but does this have a depressing effect on respiration? Thanks

[Ellie]

Heather R Natural CBD oil *should* be safe to take but the issue is to know what you are buying. It's not a medicine, it's a supplement, so is unregulated and what it says on the label may not be what's in the bottle - hence the "know what you're buying". If there is a higher level of THC, that 'could' have unwanted effects (THC is the compound which gets you high and should be absent, or only present as a trace amount in CBD oil.

Sativex, which is a CBD medicine usually prescribed for MS, available also for MND in Scotland on an individual basis, does not list respiratory depression in its side effects.

You should ask your doctor or nurse - it is a mainstream product taken by many folk with an MND, so no need to feel like a naughty girl behind the bike shed 😊😊

Love Ellie.

[Ellie]

Heather R Just to add...

People with MNDs (quite rightly) often knowingly take meds with side effects which may depress their respiratory function etc.

If you're not sleeping, are anxious or depressed, have chronic pain or have periods of breathlessness, that can have huge impacts on your Quality of Life so, if taking opioids, sleepers, certain pain meds meds etc to cope with today may mean you life for x hours/days/weeks less in the future, so be it. It is today and tomorrow which are the most important. xx

[matthew55]

What's wrong with getting high? At least you can forget what ails you for a while. 😆🤗😄😍xx

[Mary C]

Hi Anna, can you find out from private neurologist who your mom has been referred to and where the neurologist is based?
You could then perhaps ring neurologists secretary to see if a referral has been made and give an idea on how long your mom is likely to wait for appointment.
Otherwise like Ellie suggested try and ring you local hospice for advise.
Also your Moms GP may have had a report sent from private neurologist??and he/she might know who your mom has been referred to.
There Will also be a community palliative care team you can contact for advise.GP should have contact number.
Your mom shouldn’t have to struggle and suffer with breathlessness without being given medical support and ongoing monitoring.
I too was diagnosed by a private neurologist but then transferred to him via NHS .( I researched that he was based in the hospital I was under and checked he did private andNHS work.He couldn’t see my on NHS face to face but did so via private route!)
Good luck.
Mary