Hi , Is this a common symptom? I’ve been getting headaches a couple of times a month sometimes more but when I get them its like a cluster in my forehead and a bit in the back? I take painkillers but nothing shifts it, only occasionally a migralieve. They generally last two days maybe a little bit more but to a lesser level towards the end. I am on rebif and have been for nearly two months. However I never got headaches well not major ones, only niggles when I started and if I did I really don’t remember them as a headache really as they were that mild. These headaches I get for instance this one have started usually before my jab day (inbetween) or actually on the day. But never straight after the jab. So its confusing me. I’m coping but its annoying especially as I’ve a four year old who likes to be vocal esp singing Olly Murs and numerous chart singers at the moment. What I want to know if these are common is there medication I can get for when they strike? Thanks in advance guys xxx
Hi Lisa. I get horrendous headaches and have done for months. They feel like my head is in a vice and being squashed, I have them most days and they can be quite debilitating at times. My ms nurse said they are common with ms as it is the result of all interrupted nerve paths due to lesions. I was offered amitriptyline as a medication to keep them at bay but I didn’t like the idea of being stuck on them for the rest if my life, Im only 26 and will most probably have another use for them in the coming years. My nurse gave me some relaxation type exercises to do to relax muscles in my face and head etc, sometimes they help sometimes they don’t. Like you I have yet to find an over the counter medication to help which is very frustrating. I hope you get to the bottom of it soon Mini x
Thanks you’d think there would be something that a GP can prescribe to take as needed? I’m thinking of making a GP app tomorrow to see? Xx
Yea see what the gp advises, more than likely advise amitriptyline but that’s your personal choice good luck x
Don’t want to take something if I don’t need to as they aren’t constant. How frustrating xxx
Hi Lisa,
I posted earlier on about headaches, but think mine are linked in with the dosage change on my rebif.
Literally nothing is helping with the pain, i don’t really know what to suggest either :-s
If you do see your GP and get some advice, please let me know, they are so painful. Like you i have the kids at home and they really don’t get the ‘lets play a quiet game’ concept!
Laura x
Laura I will keep you posted. Its so annoying. Years ago I used to get bad heads and syndol worked but you can’t get this now. X
Syndol was fantastic for those kind of headaches. I really miss it!
You can get it but costs a fortune x wonder why it’s been stopped,? X
I used to use paramol which was over the counter and worked wonders. The pharmacist told me recently they don’t make it anymore as the factory burned down! X
I’m typing this from my bed as I’m on the third day of a migraine. I’ve often wondered if there is a link between my headaches and the MS as I never used to get bad heads this often until I turned 40. Mine almost always appear when my period is due/on (although not this one which started at the weekend on the left side and has now switched to the right side of my head). My first MS symptoms appeared when I was 43 and I was diagnosed just after turning 44. I’m convinced there is a link …
My GP has tried prescribing most of the usual migraine treatments and some of them have worked for a couple of months at most but the migraines always win in the end. I now take topiramate daily - 50mg at night and 25mg in the morning. It means the headaches are less severe and I’m not laid up in bed with them for the whole 3 days while being unable to even keep water down.
However the pain is still constant. It’s almost always on one side of my head, it feels like it is in my eyeball/socket, my inner ear and the base of my skull. Any movement makes it worse so things like hoovering are difficult. I often still end up nauseous by the end of the day and was very sick last night before I went to bed early.
I have mentioned the headaches to my neuro but he doesn’t seem very interested. I’m stuck with my GP on this one and I have decided I have to just put up with them as this seems to be as good as they are going to get. If you ever find a solution I’d love to hear it. I keep hoping that when the menopause hits that may be the end of the headaches - it is commonly accepted that hormones make most conditions worse so whether the headaches are hormonal or MS related hopefully they will disappear.
Tracey x
This was covered on the Barts & London blog today and might be interesting.
Hello there , hope you dont mind me commenting on this one as Im not really an MS sufferer (yet - being tested ) but mainly have ME and associated problems . In reply to Elmo/Tracey - this sounds soooo familiar to me and have suffered with one sided headches exactly as you have described for years now .
At first I just thought it was hormonal , then they continued into the menopause and became worse - leaving me totally helpless and unable to function for a day or more at a time , nothing seeming to stop the pain . It was so bad , like you felt sick and and movement of any type made me feel like my brain was moving around and causing pain , !!
One day I had a dental appointment and went with one of my headaches - mentioned it to my dentist and he suggested that it was TMJ (temporomandibular joint disorder ) - disorder of the jaw affecting surrounding muscles of the face , skull , ear and eye especially on one side - for me always the left . Is it on one particular side for you ?? The pain in my eyes , ear and down my neck at base of skull is typical of this condition - it almost feels like it deep inside my head too , so intense its unbearable . !!
Today I have seen a specialist who has confirmed that it is TMJ and that what I feel is typical of the problem . The jaw has a type of ball and socket joint that is cushioned by a disc which moves back and for when opening /closing your mouth . Sometimes for various reasons this can trap the nerves in the jaw because it doesnt goes back into the right postion after jaw movement - eating yawning , chewing etc - thus causing the pain - Have a look on google for a better description than I can make !
I know its a very common condition with ME sufferers , wondering if this is so with MS ?? Its a thought and maybe worth asking your GP if this is worth looking into ??
The consultant has given me a few options starting with jaw exercises and being careful about how I close my mouth and other simple things , will see him again in two months and move onto other things if no improvement , I can honestly say however that simply being aware and being careful about how I close my mouth , sit , and avoiding tension in the jaw , already I can feel the pain easing . I would never have beleived that something so simple could have caused so much pain until he explained why .
Hope you dont mind me telling you my story - hoping it might help someone at least . Good luck and hope everyone finds something that helps them soon . Night all .
Thanks for that post whammel. Think I will book an appointment with gp to see vwhat he says… my consultant app is not till Sept xxx
Hi Jezzy
That’s really interesting. I had to have an impacted wisdom tooth removed under general anaesthetic when I was aged about 19 and when I came out of hospital I had bruising like thumb prints on the right side of my face! The worst headaches are always on the right side of my head and I always felt that where the pain is in my inner ear it affects my jaw but I assumed that was referred pain from the ear but it could be the other way round! I do sometimes catch myself grinding my teeth at night and have to make an effort to relax my jaw. My mouth is small and my teeth are large so they don’t fit together well …
I shall have to ask my dentist on my next check up so thank you for that. If anyone can help me it would make life much more bearable. The pain is still there today 
Tracey x