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Using Sativex Advice

I’ve just started a trial of Sativex, which at the moment isnt doing anything !

I’m on 1 spray in the morning and 2 in the evening, building up the number of spray as per instructions.

What I’m finding though is that the spray doesnt seem to put a concentrated amount inside the cheek or under the tongue, it tends to just squirt out a spray that goes everywhere inside the mouth, so I tend to be swallowing most of it rather than have it absorb into the cheek or under the tongue, again as per instructions.

Just wondering if anyone who has tried Sativex had the same issue ?

hi jactac

can you ask your doctor, neuro or ms nurse (whoever prescribed it) for help with this?

is there a helpline in the bumph that it came with?

such a pity because a friend of mine swears by it for stopping the spasms.

good luck

carole x

Hiya

I used to put the spray so close to under my tongue, must have been about 1cm or less, that it couldn’t go anywhere.

Oh by the way, the only benefit I got from Sativex was a deeper sleep for the first 3 hours at bedtime before my usual wake up in pain.

Take care,

Marty

I’ve noticed that my sleeping seems to be worse ! I wake up after 3 or 4 hours and then Im very restless. @ Catwoman There’s a lot of info that came with the spray and my consultant did give me advice on how to use it but I’m finding that the spray is not a concentrated stream, it’s more of a wide mist. Maybe the spray head is faulty ?

the friend who swears by sativex also relies on Hyper Barric Oxygen Therapy for helping him sleep. have you tried this?

Hiya.

Yes, the spray head does give a wide area. That is why I try to keep it as near as possible to it’s ‘landing area’ without touching the skin. I also let it the spray contents stay in my mouth for about 40 seconds before swallowing.

I gave Sativex several tries over the years. The last time was a few months ago for 6 weeks but it looks like this is not one for me, unfortunately.

Take care,

Marty

Hi Jactac,

I take sativex too, albeit at night before bed, because that’s when my legs are at their worst with regard to pain and spasms . 4 puffs does it for me; I sleep like a log, uninterrupted, for once, either by pain or by my bladder, so I believe its worth persisting with until you build up to the level that’s right for you.

I’m totally with you with regard to the spray mechanism - its awful!! One moment you feel as if nothing’s happening and then before you know it you’ve taken either too much, or not enough - its all very inaccurate, because the pump mechanism is rubbish which frustrates all your hopes for a easy and quick solution to your problems , so I sympathise.

I find the best thing to do - for myself at least - it to spray one puff into a tissue, or the sink, and then give your usual prescribed dose for that day into your cheek. Wait a little while - a minute or so if you can manage to stand the horrid taste!- and then don’t worry so much about swallowing whatever is left - I find it still works well anyway.

Keep going, it will be worth it in the end!!

Mx

I’m into my eighth day now, and the side effects are definitely out weighing the benefits. I’m absolutely drained, it feels like an hangover everyday, nausea, headache and a woozy feeling. I think as well I might of been doing the trial dose wrong ? I have built the doses up gradually as per instructions, but I think for the first 6 days I was keeping the sprays too far apart, so I would be taking the evening doses, say 5 sprays between 4 pm and bedtime, but with an hour or so in between, which I dont think is correct because your first spray is sort of wearing off when you take the 2nd and so on ? So perhaps I’m not seeing a benefit because I’m only topping up a single dose ? I’m now thinking how long do I wait before taking the 2nd spray and 3rd spray ect ect ? Instructions say wait at least 15mins in between each spray, so does that mean take your 2nd spray if theres no effect after 15 mins ? Or wait and see if an effect kicks in, but then you could be waiting too long and the 1st dose might be wearing off ? Nothings easy eh !

Oh now I’m completely confused. And if it’s scrambling your brain too, then that makes it even more troublesome. Think I’ll just wait till medical marijuana is legalised. Then maybe they can make it in some form that a) doesn’t taste disgusting (I tried my brothers Sativex once - he gave me one of his unused sprays but I couldn’t bear the taste so didn’t bother!) and b) is more straightforward to use. Sue

Hi Jactac,

I personally don’t wait 15 minutes between individual spray; rather I take what I need -4 puffs in my case- at bed time, because that’s when my legs are at their worst. If I need any extra doses ( a rare event at the moment, thank goodness) I wait 3 hours, as suggested by my consultant, until the next 4 sprays. Is it worth going back to your consultant to ask them to be a bit more specific about timings?

I am sorry to hear that you are having some unpleasant side effects ; I get a little woozy on waking, and am a little dizzy until i have some breakfast, but these things soon wear off as the morning goes on.

Hope you get some answers soon,

Mx

( burning the midnight oil because of a study deadline - grrr)

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The consultant did say before the trial pack arrived to take 1 puff 4 times a day.

However when the pack arrived there was a plan attached that said I should follow, which was basically start with 1 puff and over the next 14 days build up to maximum of 12 puffs per day, but with less puffs between waking and midday, then the remainder between 4pm and bedtime.

Each day increasing either the morning dose or afternoon dose, alternating every other day.

With each puff 15 mins apart (at least).

Bloody simple

I rang consultant secretary to get it all confirmed and after the secretary spoke to the consultant she rang me back and said that the consultants advice was to follow what she discussed in our appointment and the instructions that came with it.

That’s all well and good, but a tad difficult when it’s 2 totally different set’s of instructions.