2 headaches for the price of 1!

Not been here for a long time, and it all looks very different - very smart!

Posting now for advice about headaches, Which I get at least daily, and they’re getting worse. They seem to be 2 headaches at the same time - at the back of my neck is a horrible stiffness and pain, and at the same time my eyes and temples hurt. I’ve had these daily for weeks if not months, but it has lately got a lot worse, and often now also accompanied by dizziness (not real vertigo, more a sort of lightheadedness…) my other symptoms are tremor on my right hand, sensory stuff and what I assume is neuropathic pain in my arms and legs (dull ache most of the time)

I haven’t seen neuro for a couple of years as nothing significant happening (touch wood…), but I do recollect him saying that the neck pain i described to him at the time probably wasn’t ms. Am seeing gp next week to see if she can offer anything to help, but be grateful for any words of wisdom from you lovely people.
Gilly xxx

Hi Gilly, well I would`ve advised you to see your GP...but you are already doing that...good. Hope he/she can help.

luv POllx

I went through quite a few years of these severe headaches, and for some reason, i dont get them very much at all, i get the odd one now and then, but like you i had them every day,the only thin that worked on mine was Extra strong painkillers from my local supermarket,they took the edge off the pain, if not altogether,you could also try ‘syndol’ they have a muscle relaxant, and quite good,

I was also told that taking too many painkillers can even make the headache worse,so i only took tham if the pain was really bad.also they could be tension headaches, and massaging the back of your neck and top of your shoulders can help.

jaki xx

It sounds like what you have might be occipital neuralgia. It causes pain at the back of the head / bottom of the skull / top of the neck which radiates around to the temple and eye socket. Why not have a google and see if it fits?

If it is occipital neuralgia, then I'm afraid it's a relapse letdown


Karen x

Oh my goodness Karen, it fits exactly - thanks! Do you think it’s worth contacting MS nurse?
Gill x
(thanks to Poll and Jaki for your replies too) x

Hi Gill, i've had the same thing as last while (seems like a relapse) my MS nurse suggested a short course of steroids but i'll try and weather it out, not fussed on steroids tbh. Good luck and i hope it passes soon...

Cheers Redman (sorry don’t know your name). I don’t fancy steroids either, but like the idea of an end to this pain, which has been awful all day today, Naproxen isn’t any help, have you taken anything else for it?

At least if it’s a relapse then that means hopefully soon there’ll be a remission!

Gill x

Hello, I get a stiff neck/shoulders - not sure if that's what you are describing. Physio exercises (I do yoga) might help to loosen you up there.

Could you be stressed, or sitting all hunched up? Could a gentle Massage help?

just an idea .... to consider along with other people's thoughts ...



Hi Gill,
Thanks for replying; I’ve had a lot of problems with my neck previously, and tried physio etc as you suggest, but thus is definitely different. The pain is at the back of my head where the neck meets the skull, higher up than my ‘usual’ pain in the neck, as well as behind my eyes (2 headaches at the same time!) The occipital neuralgia that Karen mentions really rings true.
Gill x



I have just gone through a month of hell with severe headaches which radiate up from my neck and up my cheek and into my eye socket with intensely painful pressure behind my eye. I have been getting several of these a day and they last for sevareal hours at a time.It is always right sided for me.

I have been treated by my neuro with Maxalt, a type of migraine medicine, and put on Sodium Valproate as a preventative. My GP also said it sounded like it could be cluster headache syndrome and this is best treated with pure O2. Not HBOT but normal pressure O2 from a cylinder.

Google Cluster headache and see if it sounds like what you are experiencing. Apparently there is involvement of the Trigeminal Nerve is thiese headaches although they are mainly vascular in origin but they definitely fall into the neurological camp so seeing your neuro about it may be a good move.


I do hope it eases soon. You have my heartfelt sympathy... crying1




I would definitely contact my MS nurse if I were you - you need decent meds even if you don’t want steroids, and it would be good to work out what is going on - it could be occipital neuralgia, but it could be those cluster headaches that Belinda’s been having, or maybe something else entirely.

Good luck!

Karen x

Hi again,
I looked up the cluster headache that you mentioned Belinda, but don’t think that is it, it isn’t as intense as you describe, and ii don’t have any pain in my cheeks. I really feel for you Belinda, it sounds awful.

I did ring the ms nurse, and have now started taking Lyrica. It may be a coincidence, or psychosomatic (sp!), but it is already much improved :slight_smile: I just have the residual old neck pain at the moment, plus a bit of dizziness. First day in weeks without the headache - what a relief!
Thanks very much all, especially Karen, spot on!
Gill xxx