Hello, I got diagnosed with ms last week, after they found a new lesion on the pons of my brain which is at the back.
I’ve been suffering from headaches at the back of my head for almost 5 months now on and off. And it’s ruining my life, is this because of the lesions??? Because I’m getting to the point where I wanna smash the back of my head with a hammer, and I just want to know if this is related to my multiple sclerosis
Hi,
I’ve had headaches just like you describe - for me it was what triggered my first MRI. I call it “head pain” because it’s nothing like an “ache”. It feels like someone has taken a crow bar and smashed it against the back of my head a few times. It was worse lying down. Went on for months.
However, you never really see headaches on lists of MS symptoms and my neurologist thought it might be unrelated. I went on to have other patches of pain of a similar nature on my legs.
For what it’s worth, I resolved my head pains with amitriptyline, prescribed by GP. Started on low dose and gradually moved up: the pain went over a period of weeks. Eventually I came off the drug and was ok.
Sorry about the diagnosis… welcome to the club.
Hello, can I ask what dose of amitriptyline you took for the head pains?
I think I started on 10mg, taken just before going to bed (it can make you sleepy). I was told to stick with that for a week and then increase by 10mg if necessary, I think I eventually got up to 30mg for a brief time. But any GP/nurse practitioner could advise you on this and I suspect it’s a prescription drug anyway.
One thing: be careful coming off it. You can’t just “stop” dead or it gives you nasty side effects. When you think you might try coming off, maybe check with a doctor again. I found it best to taper down the amount I was taking very slowly. I even split the tiny pills to try to reduce a bit each week. That way you avoid rebound effects. In the meantime, while you’re on it, you need to renew your prescription on time to avoid running out.
You also need to give it a bit of time to take effect - it’s not like paracetamol. It works over the course of a week or two in my experience.
I hope you find something that works. Since that initial episode, which lasted several months, I’ve had shadows of it coming back but never anything like the first ordeal.
The only other thing I found that helped, before I got the drug, was clutching ice bags to my head…