Been getting headaches for nearly a year, they wake me up throughout the night. It usually goes away once i am up, but can continue. I get the pain in the back of my neck, on too of my head, and the back of my head.
I see my neurologist who said it is coming from my neck, going to send to doctors to go physio. Also i currently take 10mg of amitriptyline. She said to up every two weeks, if need be till i get to 60mg.
I am constantly woke up in pain and just tired, i cant seem to sleep during the day.
My last mri was april last year.
Quite concerned what this could be, as it has been going on for a long time. I told the neurologist that when i keep waking up with pain, it is making me more anxious, as i am wondering what it could be.
Hi, I have SPMS and I have suffered over the years with bad headaches, when they come they may last from 1 day, or up to a week to 10 days, some put me in bed, some I can cope with, never as long as yours. My sister who hasn’t been diagnosed with MS, but has similar symptoms to me, well she’s plagued by them and her’s are really bad, so on the 1 hand it could be perimenopause, on the other it could be MS, take care.
Jean
I Have PPMS, daily migraine headaches and Menopause and find it hard to work out which is which. I went on to HRT which made some of the hot flushes better initially but now i’m having migraines at least once a day often being woken up with migraine. Major temperature swings, aches & pains in my body (hips, neck, back, stomach mainly) I’m dizzy often and have odd sensations in my head, MS hug, sights issues. As it is not all clear MS symptoms I don’t know where to turn. I have come off HRT and feel I can’t ask my MS nurses- asking them is difficult as i have to find all the correct details to leave on their answer phone along with an explanation and in the past the responses haven’t been great or helpful. I would like to be able to speak more with my Neurologist but the last one was a telephone conversation a year before was a bit better - but i don’t think i’m going to get much help until I look really disabled - currently my sleep is being disturbed as I can’t get comfortable in bed with our without a pillow. Having being diagnosed in 2020 with PPMS, it’s hard describing how i’m doing, like others have said i’m a bit divided, part of the time i’m doing ok and then at others life is so hard.
I take so many painkillers and Sumertriptan tablets it worries me.But the pain is so bad.
Yes, someone who can understand me! i get at least one migraine a day, sometimes waking up in the early morning with stiff neck, headache and back pain. Like you it sometimes goes away as i get on with my day, I really try not to take too many painkillers but living with constant pain is miserable. I really do think that menopause combined with MS makes life extra tough. I couldn’t get on with Amitriptyline but are now on Nortriptyline 30mg per night with Doxycycline 60mg.
I often try to take stronger over-the-counter painkillers to stop taking Sumertriptan all the time - i get so desperate. I worry that the migraines are coming more due to the tablets i’m taken. I can totally understand this who consider extreme measures due to the constant pain.I have gone over 24 hours without any pain relief but try massaging my temples, sniffing mint oil, fresh air, eating to distract me from the pain. Massaging cheek bones and painful areas on my head, hot/cold compresses, I’ve tried so many things! I don’t know if it is helpful, I defanitly think it is to do with menopause - I have googled MS/Migraines/menopause and read about connections between them. I am looking to buy a special pillow which should help with headache, neck and spine pain.It has helped others apparently. You are not alone xx
Hi, I’m so sorry you’re having such a rough time. I don’t know if this is helpful but this is what happened to me. I get a lot of headaches and migraines, including ones that woke me in the early hours and were at the back of my head and neck and kind of up and over my head.
Then my GP commented that they could be ‘rebound’ headaches caused by the amount of painkillers I was taking. I went to the National Migraine Centre ( they have a good website and helpline) they advised that for some people taking more that 14 doses of painkillers in a month can cause more pain. I have found that it has really helped, it was very hard at first but worth it. I still get a lot of headaches, but they are more manageable and I don’t get that kind of headache anymore.
Thanks JW1, I had a look at ‘rebound’ headaches on The National Migraine Centre it was very interesting. I could try taking less painkillers again, and may speak to my GP about it. The thought of going for 6 to 12 weeks without pain relief is quite scary and I’m not sure how I could do that. I’d have to take some time off work maybe or just try and work through it. Anyway, thank you for your concern & help.
Hi, I have had headaches like this. In fact, it was my first symptom that led me to the MRI scanner.
Like yours, they were worse lying down. Mine were sharp pains, in patches, felt like they were near the surface, mainly towards the back of my head. They were so bad at times I could only bear to put my head down for 20-30 minutes and then had to lift it - so no sleep. The pain then spread to neck, shoulder, and (this is the weird bit) to both legs, in a symmetrical pattern, going down. So I would wake in the morning feeling like I’d been beaten up the night before.
Painkillers did nothing.
Amitriptyline did work for me. I started on a low dose and gradually escalated, and as the dose increases the pain simply went. I really hope it works for you.
Once your on the Amitriptyline, you the have the issue of how long to stay on it. I think the advice is not to stop suddenly - or you get really nasty symptoms. So coming off involves tapering down very gently over time. I tried once, the pain returned. But later I came off it completely. I still get little episodes of the patchy head pain at times, but nothing like as bad.
Oh yes, and I’m probably perimenopause - not many other symptoms of that though.
Wishing you all the best.
I feel your pain. I’m living with chronic migraine and on HRT as well. During the first lockdown, i as having daily migraines and it was awful. 2 things i learned that helped. If you’re taking oral HRT, in pill form, change to patches or gel. Oral HRT had headache as a side effect effect and can trigger migraine for folk like us. I switched to patches in October 2020 and migraines reduced to once a week. 2nd thing is, don’t use cocodamol as a painkiller. Only makes it worsein the long run. Advice from my neurologist at the time was 3 ibuprofen at first sign of headache (look after your stomach lining by eating first or asking for Omeprazole) then a triptan 30 to 60 minutes later if headache still going. Check if that’s the same advice from your own neuro.
I cut out cheese, chocolate and alcohol and it made a big difference. Recently got 2 migraines in the same week and suspect it was cos i ate prosciutto twice. Cutting that out now to see if it helps.
Hope you’re feeling better and keep on fighting the good fight. It’s not easy playing the 'is it MS is it menopause?'game. Look after yourself