Hi all, hope you are all well (as well as can be expected of course), Rachael has had a headache since May and it just seems to never go away. Some days it is just in the background and others it is a pounding life stopping headache. She went to doctor who says it sounds like a tension headache as it is a tight band around her head, she prescribed co codomal which Rachael takes in the morning and at night, during the day she takes paracetamol but it just never goes away. Is this “normal” for M.S.? Doctor also says it’s normal after a diagnosis of any kind to be more aware of your body and changes or pains and she may have always felt this way but just more aware now, is this also normal? Linda x

What type of MS has she been diagnosed with?

Hi Linda, I had a headache from the 29th January 2012 until March 2012, ( I know the excat date it started as it ruined my birthday 30th Jan!!) I went to my GP a couple of times and was always told it was stress just take paracetamol…eventually was given a stronger painkiller sorry I can’t remember the name of it but that just zombied me…then I got O.N and lost feeling in right leg…long story short I was DX with RRMS in Oct 2012… When I asked Neuro about headaches he told they had nothing to do with MS and it was just stress…I have to admit that I was a bit dubious about this as have read that headaches can be due to MS…but it’s very easy to put every single little ache/pain/itch/twitch etc down to MS…I’m now inclined to agree with Neuro as only seem to get headaches when stressed and not as severe as last year… I sorry about your daughters dx it’s a tough thing to cope with for everybody including family members…Stay strong and take care BeckyX

Hi, daughter has rrms. She was having headaches before her diagnosis so I know it was not just after diagnosis and the stress this caused. One of the things they were worried about before diagnosis was a brain tumour as her head hurt so much and nothing seemed to move it. I too found on reading stuff on internet that headaches was not one of the symptoms so that is what is concerning me as I keep thinking what if they have it wrong, what if it is a brain tumour but logically I know they looked at M.R.I. and could see 4 lesions as well as a significant one in her spinal column. They even showed us the M.R.I. and pointed to the lesions and I am sure they can tell the difference between lesions and tumours (I hope). My head has hurt since diagnosis and I know that is stress so maybe she was more worried about what was wrong with her before diagnosis than she was letting on. I just feel so helpless, I want to take it all away from her and take it myself. Thanks for replies. Linda x

I know everyone’s different, but I’ve got to say I’ve never, ever had a headache with MS. I didn’t really get them before, and I don’t get them now.

The only thing I know gives me a headache - is, guess what? Codeine - found in cocodamol. So I’m wondering if this is not an MS thing, but a hangover-like effect from repeated codeine use (it makes me sick, too, if I take too much).

It can be self-perpetuating, because if you don’t realise it’s the codeine that’s doing it, you take MORE.

I’m not against codeine, because it’s still the most effective painkiller I’ve got (my pain is mostly musculo-skeletal, not neuropathic). However, I’ve learnt to keep it only for the really bad days, because although it works brilliantly, and usually really quickly, I just don’t tolerate it very well. I always find it’s a very fine balance just how much I can take, before I’ve replaced one lot of problems with another. :frowning:



Tina is right. If you read the leaflet fully about co-codamol tablets you will find that you shouldn’t take them continuously as they will give you a headache. I would suggest that your daughter stops taking anything for the headaches and maybe also considers cutting out all caffeine. In the short term this may make the headache worse but after about a week she should be headache free.

Tracey x




Hi Linda,

I have these types of headaches, which sometimes last for months. They come and go in the sense that some days, my headaches are not as severe. My GP prescribes Amitriptylene for them…I usually start off on a low dose of 10mg and sometimes need to increase it to 20mg, but this usually sorts them out. I take the Amitriptylene for a few months only.

My GP said that continually taking codeine, paracetamol or ibruprofen can give you headaches.

Fizzy x


as well as reducing caffeine make sure that she is not dehydrated.

i drink loads of water, always have but still i get dehydrated in this warm weather.

our bodies leach water from the brain causing headaches.

carole x

Thanks guys, will stop her taking the co codamol (sp) today, she takes paracetamol for skeletal pain so if we were to stop that what should she take in it’s place or should she just try it without pain killers and see how things pan out? She does not drink caffeine or water but she drinks loads of juice, either fruit juice (apple or orange) and diet fizzy irn bru or coke. Just realised there is caffeine in the coke, not sure about the irn bru though. Will start encouraging glasses of water at meal times and that way she might not notice her water intake is increasing as she says she hates water (teenagers!!!). As for replacing one set of problems with another I totally get that as some of the side effects might actually be worse than the thing that she is trying to deal with. Wish me luck when I start plonking down glasses of water, she might have M.S. but she is still a stroppy teenager. :slight_smile: Linda x

I would try only eliminating one thing at a time. If that fixes it, you know you can leave the others alone. The codeine in the cocodamol is, in my opinion, more likely to be a headache culprit than the paracetamol alone. So you might try just paracetamol, no codeine for a few days, and see if that makes any difference. As Tracey has mentioned, things may get worse for a few days before they get better (a type of withdrawal).

Unless she’s drinking absolutely gallons of the stuff, I don’t think there’s any need to ban coke. This illness can be miserable enough, without ruling out small treats, that everyone else enjoys. I’ll be the first to admit coke’s not exactly a health drink, but I don’t think the odd can is going to make a huge difference.