Hi everyone. I have been suffering for the past 5 days from a weird headache. It is all over my head and moves about from the left side to the right, but the worst bit is that when I stand up or move quickly I get a really sharp pain which subsides within seconds. I also find that if I sit down after moving about I can feel and sort of see my pulse in my eyes (not sure if that makes sense!) It is really worrying me now. I think I may be having a bit of a relapse at the moment as my legs are a bit achey etc but just wondered if anybody else has had the weird headache thing or if I should go to dr. and see if it’s something else. Sarah x
Hi Sarah The symptoms you have mentioned are very similar to those I have been experiencing. The “seeing the pulse in your eyes” makes sense to me as I also found this very weird . It lasted for only a few days. I was diagnosed rrms in June after a particularly active relapse. It is slowly remitting however the symptoms you have mentioned remain but appear to be easing. Legs are still painful especially my hips. Eyesight is just about back to normal and headaches seem to be less frequent. Everyone seems to have different symptoms but if your not sure about them it’s worth seeing your GP or seeking advice from your MS nurse to be on the safe side, after all that’s is that what they are there for. I hope you feel better very soon. Mick
Thank You Mick. My MS started as optic neuritis and I often get blurred vision and headaches but not usually this bad. I am worried about the pain when standing as I have looked on internet and it says about brain tumours. I am now worrying about that! Apparently the pain can be due to pressure in the skull. I’m such a worrier. sarah
Don’t read too much into things you read on the Internet, there’s too much information on there for us to know what is true or not and makes it all too easy to self diagnose, probably wrongly at that. Stick to the professionals, they do this for a living. Please do get yourself checked out as soon as soon as you can so you will put your mind at rest instead of constantly worrying.
Hi Sarah. Please don’t worry about the pressure headaches and the black pulsing in the eyes. I get them and have done on and off for over a year, I too was worried about brain tumours, it’s natural to think that I suppose. My neuro told me its to do with disrupted nerve paths. Because of damage due to the ms the nerves are trying to find alternative pathways to make up for the damage. It’s not very nice but I hope they subside for you soon. Mini x
Hi Sarah. Please don’t worry about the pressure headaches and the black pulsing in the eyes. I get them and have done on and off for over a year, I too was worried about brain tumours, it’s natural to think that I suppose. My neuro told me its to do with disrupted nerve paths. Because of damage due to the ms the nerves are trying to find alternative pathways to make up for the damage. It’s not very nice but I hope they subside for you soon. Mini x
Thank You for your helpful comments. Mini, the pain is just frustrating. It has now travelled to my neck and everything aches. I spoke to my ms nurse today but to be honest I don’t find them helpful. She said to see my GP so I am going tomorrow. Trouble is I don’t know who I should really go to if I am having a relapse etc. I know there are drugs that can help for certain MS problems but I have no idea if I can go to my GP to ask for them or if I should go to my nurse/Neuro. I haven’t seen neuro for over a year! I have only been diagnosed for about 2 years so any new symptoms are confusing as I don’t know if they are MS related or something else. It’s all good fun!! x
Hi sarah…i too am experiencing headaches its like a pressure its awful its travelled to my neck and my lower back really aches i had it for 6 days with no let up then it went for a day but then came back! Im goin to see my gp tday to see what they say hope u are feelin better soon Lisa xxx
Hi honeypot. How did you get on at the Dr.? I still have these headaches a couple of weeks on. Today I was ok until about an hour ago when I had what felt like a hot poker held at one point on my head. It has now turned in to another headache. The Dr. gave me some amitriptyline which seems so have helped a bit. I wonder if this really is normal for us MSers!! Sarah x
Hi Sarah, I’m so glad I looked at the forum tonight because your post could have been written by me! I’m going through the exact same thing and its pretty scary. I’ve had ms for 12 years now and this is the first time I’ve had this symptom. I went to the doctor 2 days ago and he gave me painkillers and said its probably just your ms! Not very helpful! I tried to explain that it’s not really a traditional headache but I don’t think I explained it very well, it’s such a weird thing to have to describe, I feel like I have pins and needles all over my head! Am going to phone my ms nurse tomorrow to see what they think. Hope you are okay, take care, Hayley x
Hiya sarah how are u feeling now? I went to the gp he said he wasnt sure whether it cluster/tension headaches…i explained ive had them before this feels different.anyway he said im to take paracetemol and ibuprofen regular everyday for two weeks then go bk, also have bloods taken in the meantime. Wel ive still got it, its makin me truly miserable ive got 3 children a hubby and a dog i dnt hav time for this!! Ha seriously tho getting me down now and ive had to stop the ibuprofen as gives me terrible stomach pain. Thank u for asking how i got on take care…lisa xxx
Hey guys, how’s everyone doing now? I’m seeing the m.s nurse and neurologist on Tuesday so fingers crossed. They have advised that a course of steroids might be in order and have said that this just sounds like a relapse. Am taking paracetamol and Diclofenac as directed by the doc but it’s not really doing anything. The amitripyline at night is helping me sleep but I only get to sleep through the night when my one year old does so am not getting the best rest at the moment, bloomin teething lol! Anyway, hope you are feeling better Sarah and you too Lisa. It sucks that you are going through this too but helps to know I’m not the only one! Take care…Hayley x
Hi ladies. I’m sorry that your still not feeling good although you wrote these posts a few days ago so maybe you do feel better? Anyhow I still have the headaches and also a pain in my neck, shoulders and behind my eyes. Am fed up now too. I have been on amitryptoline or whatever you call it! It does seem to help a bit but I am finding it really difficult to get out of bed… even moreso than normal!!! Still also having the weird pain thing when I stand although not as much as before. It is so difficult when you have young children. I have a 5 and 2 year old and I they need a mum with lots of energy which I don’t have. My eyesight it not great at the moment but not sure if this is to do with the headaches or not. Let me know how you are. xx
Hi there, saw my neuro doc and ms nurse on Tuesday and have started a high dose of steroids…so far so good! It was also suggested that I double my night dose of amitriptyline and this has helped to combat the restlessness and insomnia that I usually get from steroids. Still have the weird tingling in my head but the sudden jolts of pain have gone. Am having good mornings but being left feeling drained by the afternoon and with a more traditional headache, which I am just taking paracetamol for, so although I’m still feeling pretty low it’s a definite improvement! The pain in my neck, shoulders and eye has eased too so I’m feeling hopefully with this course of treatment. I’m just waiting on an MRI now to check for signs of progression. If its any consolation, they seemed to think these symptoms are quite common! I hope you are all feeling better, take care, Hayley xx
Hi everyone i hope things are improving for u all. i had my bloods done tday i see gp again thursday so hopefully get somewhere with this! My head still feels like somebody sat on it n my eyes hurt now too bloody fed up this is the fourth week ive had it now xx
HI all. I cam back to see if there were any new posts! Honeypot when you say your eyes hurt do you mean behind them? Like a sharp pain? I have been getting this on and off for a while but only in my left eye which is the one I had ON in. I wonder whether it is inflammation of the nerve but without a problem with the vision? Not sure if that’s possible. My headaches are still present as well polar bear and I have had enough. I’m not sure if I have sinisitus. I don’t feel bunged up but my cheeks ache a bit and my nose hurts too. Never know when it is MS but read somewhere once never to assume it’s MS. Trouble is this results in my going to the Dr. a lot and feeling like a hypocondriact (SP?). I just keep worrying I have a brain tumour when I am sure it is just MS! Does not help with my anxiety at all but just trying not to google too much. Hope you are all feeling better soon. x
I have vision problems like you get with ON, but the pain only comes every other day or so with neck pain. Very odd.
Hi everyone so i went bk to gp tday as arranged my bloods came bk fine but as im stil no different and now feeling nauseous n vomited couple times sending me for head scan…hey sarah u asked bout my eyes its not sharp pain its like they are bruised had eye test also to rule that out n my eyes are fine so duno wots goin on but im fed up! How are you all doing hope better xxx
Honeypot I hope you get some answers from the head scan. I am too really fed up today. I woke up with a huge headache on the right side of my head, have taken two lots of nurofen and paracetamol since I got up and still there. grrr…I too feel nauseous but have not been sick. the pain is now in my cheek as well and my neck and shoulders. My right arm feels quite achey today so i’m wodnering if it’s a relapse. Just so bloody annoying as my ms nurse gp etc are just so vague. I’m going back to gp next thursday so hopefully get some answers! Keep me posted how it goes. xx
Me again… Have just done a bit of reading on Dr. Google and it seems there is possibly a link between Acid reflux and headaches. I know I have been suffering a bit with acid reflux and so I will mention this when I go to the gp. Just found it quite interesting. x