I’m having a really tough time at the moment and I am starting to dread going to bed. For some reason the pins and needles, tingling and numbness get worse within 2 minutes of me lying down. I spoke to the MS nurse and she suggested a memory foam pillow to support my neck, which I’ve ordered, but in the meantime I’m trying out various different positions.
My sleep is really affected and I wake up several times a night with ‘dead’ arms or legs (or both). The other night I woke to numb arms, legs and my chest and face started ‘buzzing’. It’s so scary and was only helped by walking around for a few minutes. Even then the numbness came back as soon as I lay down. I’m taking 20mg Amitriptyline at night, but even that doesn’t seem to knock me out as it used to, (although it makes it really hard to get up for work the next morning).
During the day the tingling is there, but much milder.
I’ve got another month before my first appointment with the MS neuro and I’d really appreciate any advice anyone can give me.
Maggie x
I’m yet to be dx, but I have constant tingling in my legs and right arm, and this is much worse at night to the point where it becomes quite painful.
I’m afraid I don’t have any answers, but just wanted to let you know you’re not alone. I gather you’ve been dx with MS? Is this a recongised symptom?
Hi Reikiblossom - I do get hot in bed and have suffered from night sweats for years (especially at the time of my period).
Purpledot - I’ve not yet been diagnosed, although the last neuro said he was sure I have MS and have probably had it for years … I know that stress and tiredness seems to make these things worse and should be avoided !! My first appt with the MS neuro is at the end of September.
Maggie
You can up your dose of Amitryptyline (obviously in consultation with your GP) I was on 20mg for 18months after a disabling attack of transverse myelitis and recently had to up the dose to 40mg for exactly the same reason as you. I take my dose around 7pm on a school night as I have to get up for work at 5am. The reason we doubled the dose was my GP thought I would get the additional benefit of the Amitryptyline working as a profilactic (can never spell that - preventative) for the horrendouse headaches I have. She thought it would kill two birds with one stone…she was right it has worked on both problems. My GP tells me to keep coming back as she says there is a lot they can do by tinkering with meds. I am very lucky though she is very caring. I am not diagnosed as MS, though it is suspected. Hope this helps Gill
Gill that’s really helpful, thanks. I’ll have quick chat with the MS nurse to confirm dosage.
If you take the amitriptyline at 7pm are you ok to get up at 5am? When I took a higher dose as a one off recently I felt pretty drugged the next day. As a teacher I need to be pretty alert and it was tough functioning that day.
Sam