Sticky Blood-Hughes Syndrome Support
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ache in neck, behind ear and top of head

I do not know if anyone has had this type of pain, but I woke up with it yesterday and thought it was to do with pillows, took paracetomol slight relief but have it today. Yesterday I thought I would check INR and it was 3.0 (my range is from 3.00-4.5) i gave myself clexane - i am rather stressed at the moment - as daughter is doing A lvels and the stress from her is getting to me. I know that when I am stressed about something my head etc hurt. I try to unstress during the day, but then I am getting worked up when she comes home, of late, she is one minute okay and then the next shouting etc about her A Levels.

7 Replies

I often get like trapped nerve pains & it goes from my shoulders up into the back of my head or behind the ear as you've said, I think it can be due to migraines or stressful things going on.....I actually have woken up with it today also!!!

Hope it eases off for you, its not inr is ok too as I sometimes think it may be down to that......

Sue x


Hi - thanks for your input, what do you take for this?


Hi sometimes I take zomig...this is a migraine tablet but not a really strong one & I find it can help, but if its really bad an imigran or tramadols....I try to make do without them tho' if I can...... or put a wheat wrap around my neck & shoulder area....I find that helps or a hot water bottle & just try to chill for a tv whilst having a little lie down maybe. Hope your a little better today x


I have pain at the back of my head and my neck. It is almost always there to some degree. At its worse, it feels like someone smacked me in the back of the head. At first I thought it was that I had slept wrong. It took me a while to realize it was not related to anything that I was "doing". Sometimes just pressure from one finger at certain points at the back my head (always both sides) is very painful. I do not take any medication for it, but limbering exercises and heat help, be it a hot shower or a heating pad. It is kind of like having permanent whiplash or a chronic meningitis. I sympathize.


Yes, I get similar symptoms. I was diagnosed with Thoracic Outlet syndrome years ago and it does seem like I am locked at the point where the neck meets the shoulder on the left side. I get cranial neuropathy on the left hand side which sometimes seems to creep through to and over my nose! Muscle spasms have been mentioned as have trigger points, Fibromyalgia etc... Pilates has helped but it is always there to some degree and only Co-comadol has any impact (heat is good but not long lasting)....deep relaxation sometimes also.

It has been suggested that this is not Hughes but a related Lupus/Sjogrens-type inflammatory state so Predisolone has been prescribed but somehow I can't get myself to take them....INR does not seem to have that much bearing on whether I have these sensations or not (target 3.5, unstable due to Lupus anticoagulant factor but largely in the mid 3s).

Wish we could have a device that told us what was going on etc....!



I also get it right hand side all the time, have had it last 4 days now, tramadol doesn't ork, only laying down a certain way relieves it until i get up, take care xx


I have this pain and tenderness behind my right ear. Mine is made worse when I chew. I was diagnosed with Trigeminal Neuralgia. Right now a muscle relaxer helps some. Heat helps. I don't know yet what long-term treatment I will have. Look this up online and see if it describes you pain. I also cannot sleep on the right side of my head either. Hope this helps. It was two years of suffering before I was diagnosed by my Lupus doctor.


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