Hi I hope everyone is doing ok today and coping in the heat. I’ve not been on here for ages. I was diagnosed about 3 yrs ago with R R MS after having double vision. I’ve had been on Rebif after having one relapse but last Sept I was also diagnosed with secondary breast cancer too so treatment for that took priority and I stopped the Rebif as I was on enough drugs! I’ve been doing ok until 3 weeks ago when I started getting intense pain in my head…either in the crown, back of head or left side. It only lasts a few seconds but its pretty bad and seems to be getting worse. It started off happening about 10 times a day but is much more often now. Im alternating paracetamol and Ibruprofen and I’ve been to my GP who couldn’t pinpoint what is causing it. She’s contacted the Oncology dept. who are treating me to try and organise a head scan. I’m just wondering if anyone else with MS has had this symptom as at the moment I don’t know if its cancer or MS related…my GP said it didn’t sound like cancer related. I’m just hoping they can scan me this week. I’m fine when I stay still or keep my head level but its when I get up from sitting or laying and also wen I’m on the loo for some strange reason! Has anyone else experienced anything similar?
hi
sorry to hear about your double whammy on the health front.
i’ve had pains like a meat cleaver going through my head, like you they only last a few seconds.
my gp said it sounded like caffeine may have caused it, i cut down on coffee and they stopped.
also what you say about keeping your head level, standing oy laying down sounds like postural hypotension.
i have this and it seems that my blood pressure plummets if i look up or down.
the first i knew of it was when i fainted and cracked my head open. i came to with paramedics knelt beside me in our kitchen!
such a drama queen
carole x
oh and my gp checked it by taking my blood pressure and put one of those clips onto my finger.
then he asked me to stand up and keep telling him if i was ok.
it went like this… ok…ok…ok…ok…i need to sit down
the gp saw my blood pressure drop suddenly
its not so bad now that i’m aware of it
take care
carole x
Take a guess that it is neurological pain. This hits different people in different ways (like: I used to get the “electric shock” type of pain, only in my left shoulder and side, and only after I had driven for a hour and then made it across the car park and up to my 3rd floor office.) The thing that stopped the shocks was Gabapentin. Initially this was requested by a Neuro, but a GP can prescribe it.
Ibruprofen is only good against pain from inflammation (and personally, I will not take the stuff). What you could do is to contact your MS Nurse, or at a push your Neuro’s secretary, and ask them to liase with the Oncology people when you have a scan. That is, of course, provided they are going to do an MRI and not a CT scan.
The bit about sitting on the loo does suggest a neurological cause.
I was thinking blood pressure - like Carole. But I was thinking high, rather than low. Have you had it checked recently? Standing up from a seated or lying position can increase blood pressure, as can…er…pushing on the loo.
Tina
Thanks everyone for all the replies. Interesting about the blood pressure… I saw my GP last week she took my blood pressure twice. It was high both times so she did say I should pop back to use the self check machine there so I shall do that tomorrow. Good idea about contacting Neuros secretary about liaising with the Onc about scan results. I just need to get on the case tomorrow to get a scan ASAP as I can’t go on like this for weeks! I shall annoy everyone ringing every day until they get fed u with me…I’m learning that’s be way you have to be to get something done unfortunately. I have noticed that when I get the pain if I look and by tip my head back…it relieves the pain…anyone of you clever people have any ideas why that might be? Thanks Abbey
I spoke to the doctor on call today and she said they’d only be concerned if it was making me sick or waking me up in the night. I’m now actually thinking if all else fails maybe I’ll have to say that’s what’s happening so they may give me a scan sooner!
I spoke to the doctor on call today and she said they’d only be concerned if it was making me sick or waking me up in the night. I’m now actually thinking if all else fails maybe I’ll have to say that’s what’s happening so they may give me a scan sooner!
good luck abbey
Hi Abby
Sorry to hear about your very unfair illnesses, ms is hard enough to cope with on its own without cancer added. I’m no expert but I’d agree with previous replies that it sounds more like blood pressure. The only way to get a really good picture of how it’s behaving you need to convince the gp to give you a 24 hour monitor. That’s where you have a monitor attached for a day and night and it monitors you very often so they can see you busy and at rest.
Hope you get sorted.
Min x
You have been through it, poor thing … Please try not to worry about these pains, go ahead and have them checked out better safe than sorry, but I had this sympton from early after I was diagnosed in 2011. It frightened me until I discovered it was apparently quite common with MS, and is neurological pain! Beast when it hits, but if it is any reassurance mine disappears for months at a time … then just reminds me every once and again! Good Luck x
Trace how long did yours go on for each time? What did you take to control.it? My GP has prescribed amitriptyline alongside the paracetamol and ibroprofen. It’s gone on for nearly 4 weeks now. I wonder if I ought to start the Rebif again now.
i get these, the dr calls them ice pick headaches, as they only last a few seconds but enough to put you on the floor with the pain, she said cut diown on caffiene and try to reduce the stress as much as you can try to…i only have a few attacks a month now as before i was getting up to 8 in a day, i use paracetemol for headaches and imigran for migraines, wen i get 3 attacks in the start of the day, then i dose up on imigran to try to reduce the severity of the pain, lie down in a dark room and try to de stress as much as possible and just rest
I tried the same as suggested by your GP, all that did for me was make me drowsy … in the end I gave up and lived with it! But I was lucky, it went away eventually, occasionally it resurfaces taking me by surprise, kinda like childbirth you forget the pain until it hits again lol. Funny you mention Rebif, as I came off it over a year ago, and when I think of it … it may be coincidence, but I don’t get it as often, and when I do, the pain although severe, is kinder in frequency and the condition does not stay with me several times a day for months, like it previously did. To be honest my whole health has improved since I came off Rebif, now I have a life again, even if it is different! Every one is different though, and we react differently, it was my neurologist who stopped the Rebif as I had constant flu like symtoms, right until was re-diagnosed with SPMS, therefore, past DMD’s, so I am not suggesting for one minute you don’t resume with the Rebif, but don’t be afraid to ask for an alternative if it is making you ill. It makes it more difficult to tell with other symptoms you are experiencing with other problems so leave it to the professionals and please try not to worry too much as it will just stress you out too much and therefore aggravate the problem. Good luck and hope it eases for you soon. x
Ice pick headaches … perfect description, my GP did not name them like that, and the MS Nurse just nodded her head and said it was the MS and neurological pain but I actually think that name is so apt!