Hi all, I have today seen my consultant. Has been 21 months since last apt and symptoms including fatigue, bladder, bowel and right hand side clumsiness / fatigueability are presenting as much worse. I asked for LDN on NHS and got a blanket no as evidence is all anecdotal so they never prescribe it. I was disappointed. I was offered an apt with MS nurses to review and hopefully improve bladder and bowel function which I accepted. Jan/Feb time. She also offered me Gabapentin for neuropathic pain as well as suggesting anti depressants from GP. I am currently awaiting counselling sessions due to a family bereavement and she feels this has made my low mood (emotional lability included) worse. So I guess my question is should I go for Gabapentin and anti depressants on NHS (I do pay for prescriptions) or do I go for LDN privately through Emed or similar? All experiences / responses / advice will be gratefully received. Thanks. Ann xx
Haven’t personally tried any of them - except, long ago, anti-depressants, which didn’t work out for me at all well.
But I just wanted to ask, are they mutually exclusive? Couldn’t you mix and match? I believe many here (well, several, at least) use privately-prescribed LDN in conjunction with more conventional, NHS-approved treatments. So does it have to be either/or?
I know you can’t take LDN with opioid pain relief - e.g. codeine - because they would cancel each other out.
But I don’t think there’s anything to stop it being taken with gabapentin amd/or ADs (obviously, you’d have to double-check with the prescriber, and not conceal that you were intending to take both).
IF I was faced with this decision, and in a position to afford it, I might look at gapapentin on the NHS, and LDN privately. Skip the ADs initially, as LDN supposedly has a positive effect on mood anyway. But then again, my choice would be coloured by my previous bad experience with ADs, which means I’d be unlikely to touch them now, under any circumstances. I do accept they’re helpful for some people, but it’s not a route I’d want to explore again, having already tried it once.
i haven’t tried LDN at all but did try gabapentin about 8-9 years ago for neuropathic pain, while they didn’t do anything for me, they do help plenty of people. i had an altogether better time when i was prescribed pregabalin, which really improved my pain levels, again, other people have different results. more recently, 2 years or so ago, i started taking anti-depressants, nortriptyline, which also backs up my many pain meds, they worked for me. as long as you follow medical advice, basically it all just seems like a ‘suck-it-and-see’ kind of thing. sorry i can’t give more definitive suggestions. hope you find the right meds soon.
As a LDN ‘user’ - with good results - l do agree with Tina - that if l was you - l would get onto LDN - then you might find you do not need Anti-D’s. Amitriptyline is a good med - with mild AD effect. My experience of Gabapentin is that it left me feeling very morose.
Not a good feeling. Then the ‘vet’ prescribed it for pain relief for my lovely old dog who had bone cancer. The effect on the dog was similar to how l felt on them - he just lay there with a glazed look. So l stopped giving them to him- l did not want him to be comatose in his last days.
Yes, lt is up to you to try and see. But certainly give LDN a good trial. Have you looked up the side effects of Gabapentin. Vitd3 and magnesium also helps with pain - as well as being recommended for pwms. B12 - helps with memory/tiredness. All things you can take alongside LDN. Now l take paracetamol and codeine to help with arthritis pain - so l take my LDN about 7pm. So then l can take the codeine at 11pm - and again in the morning and midday. You have to leave a 4hr gap either way.
LDN can help with bladder behaviour and fatigue.
Thanks for your comments. My husband and mum both want me to try LDN but anyone official (GP, consultant, MS nurse, MS advice line) seems to be very scathing. Read somewhere that they are starting trials in (Central?) America for MS. Think I’m worried about the expense and possibly being disappointed if it doesn’t work for me. MS nurse felt it’s success is a placebo effect, to which I replied, I don’t care if it’s a placebo as long as I feel better! Thanks again. xx
Definitely not placebo from personal experience
Plus it’s one of the few things for MS that doesn’t make you fatigued, or have a whole list attached of possible nasty side effects!
Like Spacejacket says, you can take both
Sonia - stay away from anti-depressants! Like stay a long way away.
Particularly avoid the SSRIs and especially Seroxat. All the people I have known who were on it got worse rather rapidly.
Gabapentin is good for neuropathic pain. For a lot of people it is all that they need - and for some, it comes with side effects.
The alternative usually offered is Pregabalin (and the side effects of this can be worse).
LDN does a “feel-good” job for a lot of people, notably in the area of bladder control - some people do not experience any benefit, and a few get side effects. Its down-side is that it is not approved by NICE for MS (but now that a major drug company has picked up the patents, and is supposed to be organising a Stage III trial, this could change).
So, Gabapentin and LDN do different things - they are not alternatives.
The best thing that you can do after your bereavement is to talk about it to anyone who will listen. This works without any side effects at all, but it will take a few months to work. (Been there, done that) A good counsellor will probably actually listen while you talk and subtly direct the conversation so you talk about what really matters to you
Geoff, think you meant to address to annelda72? (It’s a nuisance sometimes that you can’t edit!)
Anyway, interesting to hear that comment on LDN, it’d be great if they did sign it off
Er, no, Sonia … …
The first bit really was for you, and the rest was more general.
Love the smileys. Why can’t I get the return key to work? Thanks for all your responses. I do realise they are not the same but want to know which will have the most value first. Seeing GP next week so will discuss.
Not only did I get it wrong, but I got it wrong again after Sonia pointed out the first error to me!
Sonia and annelda72, my apologies.
I would grovel, but I would never get up off my knees again.
Oh Geoff, that’s funny… I actually thought I must have said something to confuse matters. Shows that my brain i stuffed up with marshmallows/cotton wool these days!
Marshmallows was my husbands comment after seeing the state of my sinuses etc. on my MRI
I won’t allow grovelling either… as I’d want to help you up and then it’d all get a bit wobbly. I think my MS bruises easily rival my pole bruises these days
Am now using Firefox as my browser and guess what…
I can return AND use smileys!
Christmas has come early for me. I find it amazing the things that cheer me up these days.
Anyway, got my prescription of Citalopram today. The side effects look absolutely terrible. Am debating whether to start them or wait for Gabapentin. I think I might start the LDN process anyway. I believe I just have to send emed proof I have RRMS and it all looks pretty straightforward then.
I have a better feeling about that than the Citalopram anyway. The online side effects for Gabapentin look pretty scary too.
Might help if I can see into the future but think I’m going to ‘gamble’ on LDN as it ticks lots of boxes and I have just found it it has worked very successfuly for my godmother. It was apparently (and coincidentally) the drug she told my mum to tell me to start taking 3 years ago at dx. Too busy being an ostrich then though!(Sunglasses instead of head in the sand).
Thanks for all your comments - even the confusing ones.
I take gabapentin, best advice I can give is start it very gradually, my gp started me on 100mg a day then built up a hundred a day, until I was on 300mg 4x a day saw the neuro last week who said to take 600mg 3x a day so I am gradually building up to that, I have felt no side effects that I can pick out from feeling a bit weird anyway ( I have no diaognosis yet) but the pain is definitely better with the gabapentin.
Thanks for that advice Billie. xx
Glad you got some ‘personal’ advice on the Gapapentin - and l can assure you, from my personal experience, that LDN will put your own ‘smileys’ on your face.