I’ve had episodes of a burning sensation/headache or both - I can’t seem to fathom it out. The first lot was early this morning lasting a couple of hours and it’s started again. It’s so uncomfortable and painful but all I’ve taken is Ibuprofen which seems to dull it a little. Anyone else have this? All this is in between my normal electric buzz/ tingling do’s which can be at any time of the day. I usually have about 60 plus of these. I need to talk to someone who understands because it’s like toothache - drivng me crazy!
I’ve been getting a lot of headaches recently. I just put it down as a side effect from taking Gabapentine at first, but maybe it could be down to the weather and maybe not drinking enough water. I’ve been taking paracetamol for mine, which takes an edge off it.
It’s one of the things I’m going to ask my MS nurse on Friday, so I’ll share what she says.
I’d really appreciate any advice on this. I have emailed my MS nurse twice - the first being on 11th March for medication instructions for my GP (he hasn’t had any correspondence) and the second on the 24th before I wrote my post. I haven’t heard anything! My neurologist isn’t interested he just said it was a continuation of my original symptoms. The original do’s were down to about 3 a week then about a week after I started the Rebif injections at the end of February they increased to what they are now. It was nearly a year to the day after I had the flu and got my first ‘do’. How can it be a continuation? When I got my dx in December it was out of the blue as the neurologist had originally said it was a brain virus that could take over a year to get better and at that appointment when I asked what it was - he told me ‘Oh it’s MS’ as if I had asked him the time! I can’t really tell you what he said about the drugs but I know I left his room after another 10 mins with a book about DMD’s and information about an MS nurse who would see me and in shock. I thought I was going to discuss my results of my MRI scan! I was awake from about half past 1 this morning with these do’s coming and going, hubby has gone to work, and I’m STILL awake. I just need to hear from someone who can explain what’s going on. I haven’t read about anyone else having any of my symptoms on here except the fatigue.
I hope you get your headaches sorted on Friday and that your MS nurse is nice and shows interest because mine certainly doesn’t seem bothered and I know she can’t have that many ‘clients’ to see that she’s too busy.
I get the burning sensation / as I call it face pain,the burning makes my cheeks go red, sometimes both, but mostly just the right side which is the side most affected, the MS nurse told me that’s nerve pain, the face pain / headache, which doesn’t feel like a normal headache, bit long winded I know is Trigeminal Neuralga, which according to her is quite normal in MS, again I can get this down either side, but when I get it down the left side I know I’m in trouble, that for me signals a relapse / priod of activity, I’m SPMS, hope this helps. x
Sorry to hear about your headaches and all the trouble they are causing you. I too had a lot of trouble with bad headaches and eye pain with a heightened sensitivity to light (especially when it’s really bright). For me, my face feels as if I’ve been to the dentist and got some kind of anesthetic or somthing in my right cheek. Anyway I told my MS nurse about it too and she told me that she thought it was a kind of migraine. I found solphadine helpful. Maybe if its possible,you could just pull the curtains and lie down for an hour it could ease off a bit for you. Take care, Hope you feel better soon, ro
Hi Yes I think burning sensations are quite common in ms. I have just had a return of burning sensations down my neck and I also get head pains as opposed to headaches. It is like very specific pains in my head that come and go rather than a general headache. I am taking gabapentine which helps with nerve pain but it doesn’t always completely get rid of it…unfortunately! Hope it eases off for you soon. Mish x
Thank you for your replies. I’m grateful to know others have these symptoms and I feel for those who do. I’m off work again and just want them to stop or ease off. I work with special needs children and need to be alert and on the ball at all times but with having these headaches/faceaches that are burning and painful I can’t keep my mind on anything.I just want them to get easier and less aggressive. I am getting 4 - 5 episodes a day where they are like this every 10 -15 seconds for up to an hour now and it’s driving me crazy. It’s getting that I don’t want to wake up when I’ve been to sleep because I know what’s coming. Rebif injections, need something else but as you read above, am getting no response from my MS nurse. My GP freely admits he doesn’t know a lot about MS but he is going to have to give me something to help me - there is no one else to ask. Light isn’t bothering me but the left side of my face feels like it’s on fire when they come. I wondered if it was a relapse but no one can tell me.
My MS nurse put my headaches down to trying to reduce my caffine intake. I tend to drink a lot of coffee in the winter, but I’ve been drinking a lot more water and less coffee recently, so she said I need to try and up my water intake a bit more.
Thanks for letting me know Scott. I hope you get sorted If only water tasted better lol. I wish it was something like that with me - unfortunately I only have 3- 4 cups of tea a day and drink juice and water the rest of the time. It’s like looking for a piece of jigsaw puzzle…hopefully I’ll find the right piece soon and get all this worked out.
If only water tasted better lol. I wish it was something like that with me - unfortunately I only have 3- 4 cups of tea a day and drink juice and water the rest of the time. It’s like looking for a piece of jigsaw puzzle…hopefully I’ll find the right piece soon and get all this worked out.