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Just woken up - slept straight through knock at door!

Well, I had a really bad night last night. Had a relatively early night, by my standards, but woken about 2.30 a.m. with foot cramp. One of the problems is the earlier you take your meds and go to bed, the earlier they wear off… So whereas I might not normally have felt uncomfortable ‘til 4 or even 5, if I was lucky, last night was 2.30! Then all the usual stuff about: “Now I’m awake, I need the loo!” Definitely still awake at 5.30. May have dozed fitfully somewhere in between, but not much. So lost three hours’ sleep.

Just recently woken up - shocked to find it was already half-past-nine. Even more shocked to find a “Sorry we missed you” card on the doorstep, timed at 08:10. Apparently I’d slept right through it.

Luckily, my parcel was was left for me outside the back door - it’s my long-awaited £100-worth of supplements from the US, including the high strength biotin!

What a faff that was to trace and get delivered. Apparently, it has been in a bonded warehouse near Heathrow ever since 9th September, waiting for me to pay the customs clearance - which I couldn’t, because I not only had no idea who had it, or even that it had reached the UK, but no notification of how much I owed or how/where to pay it.

They claimed they had “tried” to contact me. Well how? Telepathy? No mail or email notification, so how could I possibly know where my stuff was, and to pay duty on it? Although I was fully expecting to pay duty, I still can’t if I don’t know to whom, or how much.

Well, all’s well that ends well with that at least. Tomorrow will be one month to the day since I ordered it, so about bloody time!

Can’t believe I didn’t hear the knock at the door, though. Not that I’d have been delighted if I had, as obviously so short of sleep.

Completely out of fresh food, so should have been going shopping today, but now can’t face it, and it’s already a bit late to start (takes most of the day, on public transport, and I still need to wash my hair yet).

So already another day with nothing accomplished that was supposed to be. I’ve got enough tins and packets in to be able to make do 'til Monday (no buses to the shops on Sundays), so I won’t starve, but nothing really very nice in.

So many days start off this way: “In the morning, I’ll do blah, blah, blah”, then morning comes, and I’m like death warmed up, after another crap night, and none of it happens. :frowning:

Tina

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Tina

I use Ocado to deliver usually next day, leaves me to do the important things.

Graham

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Somehow I seem to have relapsed into being a teenager again. Suddenly I can sleep incredibly late. 9.30 is relatively early for me at the moment! Today I woke up at 10 o clock, but before now it’s been 11 or a bit after. If I want to get up at a specific time I have to set an alarm. This is in complete contrast to a couple of years ago when I found it hard to stay in bed past about 7am. That stage went on for about 2 years, then I settled in to a more usual 8ish until the last few weeks. Very strange.

Luckily I’ve not missed any deliveries or been woken by the door either. Even more fortunately I’m not reliant on buses to get supplies in, this morning my OH has been shopping for dinner whilst I was taking my normal hour in the bathroom then struggling into clothes.

Sorry you feel so crappy Tina. Hopefully tonight you’ll sleep better.

Sue

Anitra - if they’re in a hurry some delivery folk don’t actually knock they just leave the goods, post a ‘delivery note’ and leave – there may ot have been a knock at all.

Hi Tina,

Sorry to hear you are having a bad day and nothing has gone to plan. What made you take your melds early, I always take mine just before I go to bed and manage to sleep for about six and half to seven hours each night, that is unless I wake up needing a wee, then I creep back to bed tossing and turning, then as you so rightly say all you planned for the next day goes straight out of the window. I do hope you feel better tomorrow.

Janet

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Morning Janet,

Bit better today, thank goodness, but still only just up, and still in a dressing gown.

I only took the meds early for the simple reason I went to bed early (by my standards).

Like you, I usually take them last thing before bed, but they don’t last the whole night. So if I’d usually be woken at, say 5:00, when they wear off, it could be two or even three hours earlier, depending how early I went to bed.

Today I got up and took a Baclofen at 7:00, and went back to bed, instead of just lying there thinking how uncomfortable I was.

It’s usually far too early for my first one, and I don’t want to increase my overall dose, so I’ll have to re-jig the remaining doses. But I’ve got six pills to play with, so I’m wondering whether to experiment with the spacing - particularly to take one if if they’ve obviously worn off in the night - but fewer during the day. It seems stupid to be uncomfortable from 5 every morning, and know a pill would fix it, but force myself to hang on 'til at least 9. I know I won’t get permission to raise the dose (and not going to ask, as I don’t really want to myself).

But I’ve still got some room for manoeuvre with the timings, and wonder if I could do better. Obviously I’m going to feel the pinch if I have only four hour intervals during the day, but then try to last eight hours overnight. Perhaps the answer is to take a dose if I’m woken by pain, and not try to hold on 'til morning. I think as long as they’re at least four hours apart, I can space them any way I like.

Tina

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Is it possible to get a slow release Baclofen? Seems too easy a solution so they probably don’t do it.

Jan x

Morning Jan,

No, doesn’t exist, that I know of. That would be too good and useful, wouldn’t it?

I don’t think all medicines lend themselves to being made that way (need the tiny beads in a capsule, don’t you?), or maybe they feel there wouldn’t be sufficient demand.

Tried taking one at 7 a.m. again today, instead of forcing myself to hold on longer.

But it’s already wearing off, which means the one I wouldn’t normally take 'til after lunch will be needed shortly, and so on, all the way through the day.

Diazepam lasts longer - about six hours, compared to four - but I don’t suppose I’ll be allowed to increase that one, as it has such a bad reputation, even though I personally have never had problems. It still doesn’t last all night anyway, though. Nothing does.

Tina

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Hi Tina,

Have you tried taking Clonazipan, I take it at night and it works a treat, even when I go to bed with pain within a couple of minutes I am sound asleep. I still wake up in pain but get a longer time asleep. Just a thought.

Janet

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Hi Janet,

Clonazepam is the same class of drug as Diazepam, which I already take. As I understand it, it’s a lot more potent (which I’m not sure I want), but actually wears off more quickly, due to having a shorter half-life (a measure of how quickly it’s expelled from the body).

As I don’t have any trouble getting to sleep (if anything, trouble staying awake, if I want to read in bed or anything), so I’m not really keen to move up to anything stronger, in case I was so sleepy I fell. It’s the not lasting that’s the problem. Everything works great for at least the first three hours. Fourth hour onwards, Baclofen has worn off - I may wake up at that point. Sixth hour onwards, diazepam has worn off too - will almost certainly wake up at that point, if I haven’t already, because I’ve now got no effective medication left in me, and starting to feel very uncomfortable. :frowning:

So I never get the full eight hours. Then there’s the wanting the loo, which is a different problem. I suspect, by itself, it might not be urgent enough to wake me, but when you wake up anyway with the other stuff, that’s when you notice “needing to go”, and have to get up over that, then.

Last couple of nights, I have tried taking the morning baclofen when I wake up in discomfort, instead of waiting 'til I’m up and dressed. It does make the early mornings slightly more comfortable (though of course, doesn’t stop the waking up in the first place), but I am not finding it that easy to get by on the remaining baclofen doses for the rest of the day. Having taken the first one so early, it leaves me one short later.

Thanks anyway for trying.

Don’t think this one is going to have a fix - unless I get official permission to add an extra night-time dose of bacofen, or diazepam, or both, when the first lot wears off. But as certain parties (one neuro, but not the other) believe I take too much already, don’t think I’m going to get the go-ahead to take more.

Tina

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Hi Tina

As I understand it, the normal maximum dose of Baclofen is 80mg per day. So, although the side effect of Baclofen is weakness, there should be no problem in taking a bit more of it at night. For a good few years, I was taking Baclofen and Amitriptyline before bed then putting one of each in a small pot which I would take midway through the night when I woke up for a wee. This way, the drugs wouldn’t get the chance to wear off and wake me with pain or spasms. (I habitual put them in a pot so I didn’t have to go searching in my drugs drawer for the right pills!) It worked for a while but eventually I started waking up with more spasms and started taking Clonazepam and stopped midway through the night drugs. I’ve found that Clonazepam doesn’t wear off through the night and in fact I’m sleeping much better, and much later now that I’m taking it. I’m not even on a particularly high dose. Obviously you can’t take both Diazepam and Clonazepam, both being benzodiazepines.

I’ve now managed to cut my Baclofen dose down to around 60mg per day, and maybe I have a high tolerance or something but I’ve not found that my muscles are any stronger because of the decrease. I would therefore see an increase through the night, at a time when it’s less of a problem if your muscles are a bit weaker, would only be a good thing. If I started to get a resumption of the night time spasms I’d start taking drugs through the night again.

I think I have a fairly robust attitude towards drug treatments. Personally, I’d be tempted to give a mid sleep extra pill a go for a week or so, then see a doctor and ask again for permission once you know whether it works and what side effects you get from it. Otherwise, if you have 6 doses of 10mg of Baclofen, start mixing up the times you take it. If you have a need for more of it at night, see if you can stretch the daytime doses out more.

Sue

Hi Sue,

I’m already doing plan B of your suggestion - i.e. still 6 x 10mg (same as you, I assume), but experimenting with the timings. I used to take 10mg on getting up, 10mg after lunch, 20mg about tea/dinner time and 20mg right before bed. The double doses weighted towards later in the day, because that’s when I tend to have most issues with cramp and spasticity.

I’m reluctant to “go up”, or even ask to, because at least one neuro already wasn’t happy with me taking 60. I think I am viewed as someone only mildly affected by MS, who shouldn’t be taking this level of drugs.

The alternative never seems to be considered - that maybe I’m someone with a very high threshold for this kind of drug, and therefore need more for it to work! I’ve never had any problem with weakness from it at all. I do suffer all the time from fatigue, which they keep trying to pin on my baclofen intake, but when I told my GP this, she double-checked my notes, and confirmed I’d clearly been complaining of fatigue before I ever started Baclofen. So obviously Tommy rot that it’s the cause, but somehow nothing I complain of is ever really due to MS, according to the “experts”.

It’s strange that I have all of these problems, but allegedly none are to do with the only illness I’ve ever been diagnosed with! You would think MS causes nothing at all, according to the official line, and I’m the unluckiest person in the world to have all these symptoms that are unconnected!

Sorry if I’m having a bit of a rant - just had a hellish journey home due to a signal failure, standing for over an hour on a two-coach train that was filled to at least three times capacity, and supposed to take ten minutes.

If I sound cross, it’s not with you, and not really with my neuro - even though I do get frustrated that my symptoms are very often overlooked (pain has never featured in my notes), ranked as inexplicable/not MS, or blamed on my medicines, and not the disease!

My symptoms right at this moment are caused in large part by Great Western Trains and/or Network Rail. Thought I was never going to get home, or would actually be passed out of the train feet first!

Tina

I’m not surprised you’re a tad miffed by your nightmare journey.

What about taking Baclofen on an empty stomach? Rather than after lunch, after breakfast, etc, try taking it 20 minutes or so before eating. That’s what I’ve been doing for years. I decided to start doing it that way deliberately because (to my incredibly unscientific mind), it would get to the blood stream without having to get through a load of food. There’s no instruction on the prescribing info leaflet to say whether it should be after food (but there is info to say a maintenance dose for muscle spasms is 40-80mg per day) so I couldn’t see any reason why not to do it on an empty stomach.

If you do decide to try asking for a slightly higher dosage, I’d take the leaflet from the box. You may be ‘only slightly affected’ by MS compared to some people, but you could try asking the next Dr who says that whether they’d be prepared to live with your symptoms??? Cramp and spasticity are all part of the MS pain spectrum. And some of the pain you’ve experienced sounds hellish. I may be less able to walk than you, but I bet your cramps are worse than any pain I’ve experienced (and I’ve had quite a bit!)

Sue

hi tina

just as some form of reassurance to you, now i am signed off i am daddy daycare but today i:

got up at 7.30 after a crap nights sleep and gave kids breakfast, supervised getting dressed, teeth brushed etc. got kids to school for 8.35, despite nearly committing infanticide over eldest deciding to read something JUST BEFORE LEAVING HOUSE!!!

when kids safely in classrooms, i went home and went to bed until 12.00

back to school as sons forgot their music for piano lessons, after that i went back to bed until 2.45

i am now STILL EXHAUSTED despite this.

therefore please don’t give yourself a hard time, fluffyollie xx

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Thanks Fluffyollie,

I keep getting the urge to abbreviate your name to FO, for ease of typing, but that’s rather open to misinterpretation, isn’t it?

Do you prefer “Fluffy”, or “Ollie”?

It’s not so much that I’m beating myself up, as I get so damn frustrated with it. I do all the usual stuff about telling myself: “Never mind, tomorrow’s another day, will get it done then” etc, but tomorrow never comes. Wake up late, feel shit, by the time I’ve gone through all the rigmarole of hot bath, strong coffee, pills, etc, so as to feel almost human, it’s almost lunch time. Much too late to start on anything that’s going to take most of the day.

So if I’m being a good girl, I take a walk round the park (about half an hour), come home, make lunch (which usually involves shoving something between two slices of bread, or opening a tin of soup), and after that, I’m knackered.

I go to lie down, to listen to the afternoon play on R4. Nine times out of ten, I fall asleep before the end of that, and don’t wake up again 'til 5:00 p.m, and that’s only because the next Baclofen is due, and the pain has started. So all I’ve done all day, apart from bath and drink coffee, and maybe a few posts on here, is walk around the park and make a sandwich!

Tina

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Hi Tina

‘fluffy’ is fine- i don’t even mind ‘fo’ as i was a teacher, so this was one of the more polite things said to me!

i know what you mean- i was supposed to go to a punishing yoga class today, but slept right through till 30 mins ago. never mind, as i will go and do something later (and low intensity) to make up for it, as i am worried about the weight i am putting on.

does the baclofen work well for you? are you able to drink on it, as a couple of glasses of wine every night are almost essential as a treat for me.

talking of radio 4, i went to the recording of ‘the news quiz’ with my best mate a couple of weeks ago. it was the first one that miles jupp did in taking over, with mark steel and sarah kendall amongst the guests. it was really good.

anyway im rambling- got to organise tea for the family (bangers and mash) but feeling tired again already!

take care, fluffy xx

Thanks, Sue,

You are indeed right about the cramp pain. I’ve never tried childbirth (except as the child), so can’t compare, but I think I can safely say it’s the worst pain I’ve ever experienced. It doesn’t help much to know it’s “only” cramp, and that nobody has ever died of it. The only saving grace is it doesn’t tend to last for more than about 15 minutes at a time, but while I’m in them, those 15 minutes can feel like 15 hours!

If I get a really bad bout of it, I can have a spate of these 15-minute tortures in the space of a single afternoon or evening. Just when I’m breathing a huge sigh of relief, and thinking: “Thank goodness it has passed!”, I start to relax and recover, only for it to kick off for another go.

Thankfully, these extremely severe episodes are rare, and I do seem to have made a definite but still unexplained link with the chip shop lunches, so it looks as if they - though never common anyway - have to go. On a more typical evening/night, I definitely still get cramp rather easily, but to a much lesser degree - the kind that is painful, but can usually be walked or massaged out - they don’t leave me stuck on the floor in a cold sweat, paralysed, but can have me leap out of bed double-quick and have to start pacing or massaging 'til it calms down.

I’ve never worried about taking the baclofen on an empty stomach or not. I’m not a three or even four-meal a day person (to include supper), so unless I dramatically changed my habits, and probably put on a ton of weight, it would be impossible for me always to take them after food. Instead, I take them whenever is most convenient.

Logically, I’d say that if the problem is they’re wearing off too soon - especially overnight - then probably, I should take supper, as that should theoretically delay absorption, and perhaps make them last longer. But if you want the other way round - i.e. to work as quickly as possible, then I agree empty stomach should be better.

I dunno, we’ll have to see. I do worry about raising the dose - even with permission - not only because of the concerns of the neuro who already thought I’m on too much, but because I could have a lot of years still to live. If I’m so close to the maximum dose this early in proceedings (not necessarily early time wise, as I’ve been diagnosed over five years, and think I’ve had it years before that - but early in terms of disability progression), I’m concerned I will have “nowhere to go”, as things progress. Yes, quality of life NOW is important, but I have to bear in mind that with a possible 40 years of it still to manage, I can’t be on top doses of things already, as it doesn’t leave me anything spare to play with. I think that may have been what the neuro was concerned about too - not having any slack if/when it gets worse.

Tina

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Just a thought - could the hot bath be making you feel even more rubbish? I know if I have a hot shower I feel far worse after than if I have the water tepid. Heat can make fatigue worse I think.

Hi Annelda,

No, definitely not the problem. I’m not worse after a bath, and still always have it as hot as I can stand. I get up late and feeling really shitty - usually having had a disturbed night with pain, or needing a wee, or both. I start to feel a bit better when I’ve gone through my ritual of bath, strong coffee, and the usual array of pills. I need the bath hot because I’m very crampy and stiff, and find it eases that.

But starting late, and then having all that rigmarole to perform before I’m even ready for the day means it’s often 11 o’clock before I’ve even done anything. I don’t drive, and going anywhere on public transport takes a month of Sundays (except, ironically, on a Sunday - when you can’t go at all). So it just ends up being too late to do it - AGAIN.

True, it saves me a pot of money never going anywhere, as I never see anything in the shops to tempt me - let alone the savings on bus fares! But sometimes there are errands I actually need or want to do, which I never get round to, because I’m losing over half the day, most days. (Late start, then needing a nap again by the afternoon).

For special occasions, such as college once a week, I can get by without the afternoon nap, but then I’m twice as tired the next day.

I’m told Amantadine is contraindicated for me, because I’m an anxiety sufferer, so as it’s basically a stimulant, it would tend to make anxiety worse. Not been offered any alternative. I suppose any medicine to treat fatigue is basically going to be a stimulant of some kind, which I’m told would not be good.

Tina

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