Headaches anyone?

Hi from a newbie,

Am delighted I’ve found this forum - you all seem so helpful. My story is that I am seeing a neurologist on the 24th Sept due to the results of a MRI scan after I complained about headaches. I’ve also had tingling feet for about 9 years now following the birth of my youngest child. I’ve had terrible bouts of fatigue when I simply don’t want to get out of bed but obviously do as I am a mum of 4.

When I originally went to the GPs about this fatigue I had the standard blood tests and my liver function tests were through the roof. I was diagnosed with auto immune liver disease and have been on the relevant drugs. My specialist could not understand that I still felt tremendously tired as my test results went back to normal.

I’m ok if I’ve got MS but the headaches are just getting so severe. I’m noise sensitive and have some difficulty watching the TV - particularly flashing images. I’ve been back to the GP twice about the pain but have got nowhere at all. I

I’ve looked down this forum and cannot see headaches as being a symptom.

I wondered if anyone has had this at all and if someone could advise me what to do.

I’m 48 now although I think I’ve had this problem in a much lesser form for 9 years. It’s so hard being in so much pain and pretending to all the family that I am ok!

Sorry for offloading on here.



I’m being investigated for ms but also have chronic daily migraine pain waa horrendous and even ended up on IV morphine for it until a migraine specialist put me on a drug called topiramate which was like a miracle cure for me. Now coming off it slowly and remain migraine free. Not sure if there is an ms link at all A

I’m undiagnosed and under investigation as I have all the symptoms for ms and permanent headache. My headaches are more like intense pressure when bad and I’ve had a couple of episodes where I was violently sick, had diarrhoea, slurred speech, loss of balance and extreme fatigue. When they are bearable it’s more like a foggy head,hangover or like having a flu type headache. I’ve only had a few days in 6months when my head has cleared a bit and I feel I can think straight. After numerous tests and 2 different MRI scans all negative I’ve been sent to a neuro octologist because my balance is on par with someone who is extremely drunk. He suspects a migraine variant balance disorder. So I have been reading on the migraine forums as well as here about symptoms and I must say that being sensitive to noise and flashing images are classic migraine symptoms. You can start having them at any age as my neuro octologist treated a 92year old who had never suffered with headaches or migraine. There is usually a trigger like childbirth or hormone changes, stress or food. Also if a close family member has them. I’ve got to have some tests to get a confirmed diagnosis but he wants me to start a diet to eliminate all triggers so that’s no cheese or dairy products, no caffeine , no fresh yeast of high yeast products ie fresh bread, marmite, no chocolate at all including drinks, no red wine, no citrus fruits or pineapple or bananas, no Chinese food or foods with MSG in and no eggs! I’m also waiting on results of yet more blood tests for muscle wasting type diseases and a spinal MRI from my neurologist who i see wednesday. So will be an interesting month. Ms and a lot of other things have all the same symptoms so it is hard to get diagnosed unless you have positive MRI scans with active lesions in the right place and fit the diagnostic criteria. Take care hope you get some answers soon.

I’ve had migraines for 18 years and was also put on Topamax as a preventative. I was hospitalised recently with completely new symptoms (whole left side affected) and I am awaiting diagnosis. The neurologist was very interested in my migraines. Not sure if I have helped much!

I’ve just recently been diagnosed with ms. Initially referred to neuro for chronic headaches. Been taking Topiramate for the last month but no improvement yet. The headaches really do get you down though, been having them daily for over a year now. Its not seen as a symptom of ms but there is research to show that people with ms suffer more with headaches/migraines. All the best x

What dose topiramate are you on now Blossom? It was when I hit 50mg twice daily I saw the difference A


Undiagnosed at the moment, had my second MRI following initial lesions found. Since my first ‘official’ symptoms, the headaches were unreal. But… they are getting less and less!!! My neurologist said that they would get less, glad to say he was right.

Hope that helps.


25mg, seeing gp a week on monday to ? increase to 50 mg. Hope it starts working soon…glad it helps you though. x

It should work soon then . I think I did 25mg once a day for 2 weeks then 25mg twice daily for 2 weeks then the 50mg twice daily and ut didn’t work until then and then it was amazing Xx

[quote=“arwen”] It should work soon then . I think I did 25mg once a day for 2 weeks then 25mg twice daily for 2 weeks then the 50mg twice daily and ut didn’t work until then and then it was amazing Xx [/quote] I pray your right Arwen. I dont consider myself a wimp…I’ve give birth twice lol but the headaches get so bad that I dont know what to do with myself. Sorry to highjack your link Sam…hope your doing ok.

Oh yes. I thought I’d got away with not having migraines - my mum and brother both get them quite badly. Then I got pregnant. It started with painless auras but now very occasionally I get sound and light sensitive and get some pain but no aura. Only once did it make me feel nauseous. I read somewhere that it is slightly more common among people with MS to get headaches. I’m now wondering if an episode of split vision I had after childbirth (and almost immediate emergency surgery) was migraine as they finally dismissed it as, or optic neuritis.

I went through a phase lasting about 5 years of getting absolutely horrendous headaches, which I put down to migraine as my Mum used to get really bad migraines. I haven’t had a full blown one now for about 6 years, and don’t miss them one bit! They were so bad that just to move my head would be agony.

Since then, I have had a few incidents of silver flashes and lights etc, accompanied with a slight feeling of fuzziness. However, if I lay down with my eyes shut as soon as this happens for about an hour then I don’t actually get a headache, although it does feel as if one is brewing until I lay down.

Coincidentally, my eyesight deteriorated fairly rapidly about 8/9 years ago (from near perfect vision) and when I had them checked I was told my eyes weren’t coordinating with each other which was causing double vision. I have worn glasses ever since, and have recently been struggling with things drifting out of focus and some weird blurring in part of one eye. My current optician has confirmed these problems are not optical. I wonder now whether perhaps this sudden deterioration in my vision all those years ago was something more significant.

Hindsight is a marvellous thing!

Thanks everyone so much for your posts. You helped me so much in as much as I know there are others out there with MS and experience of headaches but the main message was that these do get better over time.

Upon GP advice I am now taking amitriptylene alongside my painkillers and that is helping for now. I’m seeing my neurologist for the first time a week on Tuesday so hopefully will know more then.

So sorry to hear you all have this problem btw! This site really helps.


I’m new and have RRMS. I had terrible headaches that were treated with corticosteroids in a hospital setting. After about 3 weeks the meds kicked in and voila no headaches. That was 2 years ago and the headaches are back. Friday night at the Emergency I was treated and diagnosed with migraines. I was given a cocktail of drugs intravenously. My head pain seemed gone and about 3 pm in the morning I woke up with another headache. I went back on Sunday and my blood pressure was very high. I was treated with the a few of the drugs changed and blood pressure medication. Today I woke up to the same headache but I didn’t have my ex filled in time to take the medication. I will try it tomorrow. I am really agitated with pain