Morning everyone, hope you’re all doing ok. So I’ve had a terrible week with pain, I always have pain, but can live with it, but I do get times when it goes off scale, I tried various meds for it, all no good, ie Gabepentin, Pregabalin, Duloxetin, my neck and back get so stiff and tight, as do my legs, now I do take Baclofen, which up to a point helps, however I’m thinking about trying CBD oil, I have some in the past from Holland and Barret + Healthspan and it didn’t do anything, but I’ve found this site Blessed UK, they seem good, charge a bit more than the other’s, well a lot more, but I figure if it works. I just want to know if anyone else has tried the oil from them and how have you gone on, thanks in advance.
Thanks poll, it’s not so much the nerve pain, which I do get bad, its more the stiffness, when I can hardly move, get so stiff from the neck down, that even swallowing is difficult. Hope you’re doing ok x x
CBD oil did absolutely nothing for, also tried Sativex, same thing nothing.
I take Baclofen
2 x 10 mg in the morning and 1 x 10mg mid afternoon.
My consultant said that Baclofen works very differently with each person, it’s not the increasing of the dose that brings relief, it’s finding the right dose that opens the door to relief.
An example might be, start with 1 x 10mg increase to 2 x 10mg, if no joy reduce to 1 x 10mg plus 1 x 0.5mg (half a tab).
Apparently for some people 1 tablet might do nothing, 2 tablets might do nothing even 3 and nothing, but a single tablet plus half tablet triggers relief.
Increasing in full tablets might show nothing at all, but increasing in smaller stages helps, it’s like as if the body might need more than 10mg but flushes out 20mg, yet it holds onto and absorbs 15mg.
These are just examples though.
Consultant told me it’s a very trial & error medication and can be frustrating finding the trigger dose…
I use 10% of 1000mg CBD oil (not BLESSED though a local company to me) and I can honestly say that for me it has been amazing. The biggest gain for me is the easing of tightness/ heaviness in my legs. My legs actually feel like they have some new elastic in them and I feel so more flexible. I also find that it helps with anxiety and gives me a good nights sleep. Normally I never yawn as my mind always seems active, with the CBD oil I actually get that nice tired/ chilled feeling which one gets in the evening. (Which I haven’t felt for years)
The downside is the cost. I pay £52 for a 10ml bottle… I am investigating other cheaper suppliers
Hi, so are far as Baclofen goes I already take 55mg a day, more on a night, it does effect my fatigue, which neuro told me it would, so its a balancing act. As far as CBD oil goes, I did try a dose of 5%, nothing, then investigated more, found Blessed, but theirs isn’t cheap, so anon are you in Scotland as I’ve been investigated a place there CBDIABLO, they do a 10% one that isn’t badly priced and get good reviews on the CBD bible UK site, which Blessed didn’t, so once I’ve had neck and back x-ray and MRI and its confirmed to be down to MS then I will try 1 from them. Tanks for all your replies and advice.
So jactac, if you don’t increase how the heck do you find the correct dose and I always increase by 5ml, not 10ml, always give myself a good few weeks in between as advice again by my neuro, just to give my body time to adjust.
Hi Jean, just thought Id tell you about a friend of mine and baclofen. She doesnt have MS, but HSP…if you remember that`s what I was wrongly diagnosed with some years ago. There are many similarities in the conditions.
But baclofen is used in HSP as well as MS, to ease spasticity and stiffness.
She used to take baclofen orally but didnt feel it was helping much with stiffness.
About 8 years ago, she had a baclofen pump fitted inside her abdomen. It delivers a very small micro something doses right to where the drug is needed and she swears by it for relief.
She has it refilled every so often. Next month she is having a new pump fitted as the current one is reaching it`s time for change.
As you know I did go up to a very high dose of baclofen myself and that caused my muscles to weaken so much that I kept falling.
Why not look into this and see if it might help you?
Hi Poll, so I’m due for a neck/back x-ray on the 24th July + an MRI at some point soon, so I’ve got to wait and see if anything comes from that, if they come back and say everything looks ok with them and it’s down to MS, then I will look at other options, because Balofen does make my fatigue worse, which I need like a hole in the head, as it’s already bad enough, I will certainly mention this to my nurse and look at the possiblity of CBD. Thanks again Poll, hope you had a good shopping trip to Huddersfield.
Ok so what my consultant said was its not so much the increasing the dose of Baclofen, its more to do with adjusting the dose to find the dose that triggers the response.
So, yes Greenhouse you can increase the dose to find a dose that works, but the way it was explained to me is that if increasing the dosage was not working but by then reducing slowly it might be found that you find your “trigger dosage”.
For instance, someone might start on 10mg but it does nothing so they increase to 20mg it still does nothing, neither does 30mg or 40mg ect ect, yet slowly coming back to say 15mg might of been the exact dose to trigger a response, so basically you would think that by adding more you would see differences but its not the case.
He even said that he has other MS’ers who have started on 10 mg worked up to say 30mg but had no response, so they then wean themselves off slowly and found that they had some relief at 5mg (half a tab) , yet 10, 20 & 30 did nothing.
I’m also under a spasticity consultant at a separate clinic, I mentioned that I wasn’t getting much success with Baclofen and she also suggested that Baclofen can be very frustrating to find the correct dosage., saying it might be a case of increasing but then decreasing in stages, just like my MS consultant mentioned.
It was also said by both my consultants that on many many occasions oral Baclofen just don’t work for a lot of people, no matter how many permutations they try.
Hope I haven’t confused things even more
Ps,
For the record I’ve increased, decreased, jiggled it all about but I’ve still not found the optimum dosage, I get some relief about hour or two after taking 20mg but it dont last very long so I pop another 10mg mid day, but if I’m honest I dont see much improvement after that.
I’m afraid you get what you pay for. The stuff you can get on the High St for a few £££ is practically homeopathic concentrations, and it is a lucky person indeed who gets much benefit beyond placebo. Not knocking the placebo effect in any shape or form - it’s my best friend! - I’m just saying that improvements in symptoms are unlikely to be the direct effect of what comes out of the bottle, pharmacologically.
And the good stuff has a better chance of working, I agree, but it’s eye-wateringly expensive. It’s also hard to dose because they’re not allowed to give you proper guidance (on account of not being allowed to make any medical claims). And who could afford moreo than a few drops of it anyway? Finally, and importantly, at the end of the day it’s still only CBD, which is a neutered version of the real thing, and much less likely to be effective than the full-fat version.
Have you tried medically-prescribed Sativex? Unlike CBD, it is the real thing, and if I was struggling with the sort of pain you’re in, I would explore that as a priority.
What about enquiring about a baclofen pump? As jactac says, her friend (and mine) believe it does the trick by delivering the right amount to where it`s needed.
Huddy shopping was good ta. I got everything I went for.
Hi Anna, jactac explains it quite well re dosage/amounts. I was one of those who kept increasing the dosage but it did me no good at all…I kept falling and ended up with such weak muscles, I was in a wheelchair within 2 years and still am 20 years later…no-one told me the dangers of over dosing on baclofen.
Hi, thanks for all the replies, so to answer your question Alison…I’ve asked about Sativex and sadly at the moment in Huddersfield we can’t have it, just before covid Yorkshire and Humberside were going into talks to get it supplied to patients in these areas, the talks didn’t start for obviious reasons, my nurse doesn’t know when they will start, I have also asked about medical CBD, my neuro just laughed and said very few are getting this. Thanks jactac, I think I know what you’re trying to say, I’ve been on Baclofen for about 12yrs now, I do begin to wonder if my body is just to used to it. Thanks Poll, I will look into the pump and she what write ups there have been, glad you had a good shopping trip, yes I agree about the mask.
My neuro and MS nurse totally dismissed CBD oil, saying save your money ang go out for a for a nice meal instead, honestly that’s what my neuro said.
He also said that the overall results for Sativex wasn’t that impressive, but as I was fairly persistant he still arranged for me to to have a consultation with the spasticity consultant, as here in Wales the MS consultant cannot do the initial prescription.
I tried Sativex for almost a year, slowly experimenting with the dosage, a bit like Baclofen, but just found that it was just making me sleepy, giving me headaches, and dare I say making my legs feel even heavier.
It’s now on my repeat prescription from the GP but I dont bother asking for it.
Bare in mind though that we are all different and will therefor react differently to the meds, supplements or magic portions that we are willing to shove down our throats to try and combat this cr*p disease…
yes I’ve heard this about Sativex, all those unpleasant side effects, which I don’t want, my nurse just said she knew of another patient taking 10% CBD oil and said he was doing well, but she couldn’t recommend it, oh for it to be more simple, x x
x x