This isn’t true of everyone, but MS is often quite active in the first year or two of diagnosis so it’s not uncommon to have multiple relapses (small and/or large) until (hopefully) everything settles down again. Add the stress of being diagnosed and having to try and deal with that emotionally, socially and practically, never mind manage the symptoms, and there’s no wonder it’s probably the hardest period of all for us. Trying to understand it is like trying to pick up liquid mercury. And that lack of control is unbelievably stressful for those of us who like to be in charge. organised, etc. We have to learn that this is one thing that we simply have to accept: we can play around the edges a bit with meds and supplements and diet, exercise, etc, but the fact is we are not in control - we have MS and it is completely unpredictable and incurable (at the moment). Getting there, to acceptance, can be a long and emotional journey, but we most of us get there. Time and experience then starts to put things in perspective and we manage things better too so things really do get easier. Each relapse brings the fear back to the fore, but because we have been there before and got through it, it’s not like going back to those early years. Sorry for the essay; probably very much more than you wanted! In a nutshell, yes, it sucks, but you’re going to be OK. Kx
Thanks, karen. I have a real issue with me being in control of me so everything you said rings true. I’ll be fine by noon…just having a downer this morning!! Xx
Mrs H, this is perhaps not good medical advice… but when I was first on Ami I couldn’t sleep at all and found that one paracetamol would do the trick.
Didn’t do it for long as didn’t want it to be a habit, but if you’re desperate for sleep it’s worth knowing.
I take my 25mg of Ami at 6.30 pm, any later than that and I’m like a zombie in the morning.
Pat x
Thanks, Pat. Next time I drag my useless leg upstairs, I’m gonna pick them up and bring them down so I can take them early evening tonight. Here’s hoping that works!! Xx
I have just started on 10mg amitrytalline and I feel like a zombie
Hi all, Took it at 6.30pm last night and it def worked better for me. It still took about an hour of wiggling around but I dropped off at about 10.30pm and slept through til 8am with a little loo break at 5ish when hubby’s alarm went off. My head feels clearer today. Xx
Stick with it Tonka. The zombie effect soon wears off and the drug can be very helpful… apart from anything else I find it really lifts my mood.
Pat x
Hi,
Ive been taking 50mg of Amytriptyline for the last 6 months. I work shifts so get home at 9.30pm and take my pills at around 10.30 ready for bed at 11-11.30. I find that i dont feel too sleepy but then drop off and sleep like a log until the alarm goes off at 6.30 the next morning. The only problem is that it does take a long time to wake up properly, i am not fully awake until about 8am. I think though that this might be the reaction of these pills combined with the 200mg of Tramadol i take throughout the day. My pain is very bad in the evenings and I dont think I would sleep without the tablets. Stick with it, they take a little while to get into your system.
Em xx
Thanks Em Xx
Glad they seem to be working now Catherine. Oh to sleep that long! It would be bliss. Getting 4 children up and out to college/school precludes me getting up any later than 6:30am! Teresa xx
Hi Teresa, I would readily swap you the lie in for the joy of 4 school age children!! It was unusual for me though…bit more routine last night. Took the ami at 6.30pm again last night, had kept myself awake yesterday, so no naps. Went to bed at 9.30pm (hubby was up at 4am this morning so early night was on cards anyway) and woke up at 7am. So sleep patterns are slowly returning. I usually sleep from 10pm til 6.30am when at work. I am now accepting the fact, that I won’t be back at work next week. Everyone warned me that I was being unrealistic aiming for December, the ms nurse, GP etc but me being stubborn refused to accept this. I don’t think it helped my state of mind that my neuro couldn’t see any problems with me returning to work immediately as she wouldn’t accept that I has any problematic symptoms!! So am staying positive and willing these symptoms to have resolved by January and aiming for a return then. Catherine xx
I am sorry - I didn’t mean to be insensitive Catherine! Glad you are going to give yourself longer to recover before braving work again. The neuro obviously has no idea how troublesome your symptoms have been. It’s great that your GP and the MS nurse are on your side and backing you up. Take things nice and slowly now and try to enjoy Christmas! Teresa xx
No, no, you totally weren’t, Teresa!! Honestly. It’s a lovely time of year to have children. The nurse is coming out to see me this week. II fear that I may be having another relapse and she wants to see what’s going on. She’s been amazing, as has my GP. I’ve been very lucky to have them both. As, apparantly is the new neuro that they have re referred me to. Fingers crossed!! Xx
Hope the new neuro works out well. Getting a good neuro seems to be a massive lottery. Teresa xx
Doesn’t it?? In a very selfish way, it’s been good to hear that others have had similar problems. It’s just a shame that when you are at your most vulnerable, you don’t feel supported by the one person who is supposed to be helping. And I, personally, would be absolutely devastated if a client felt that I hadn’t listened or taken them seriously. Catherine xx
Thanks for the tip about taking the amitriptilene early on, I took it at 9pm, went to be about 1 am and slept till 11 am, I am walking so much better today because of this.
Thanks again. x Rhona
I have to be up at 6 on a morning. What time would be a good time to take amitripyline?
Depends how much sleep you need. I take mine 4 hours before bedtime.
I work on 12 hrs before you need to be up and about and functioning as well as you can.
Pip