Sticky Blood-Hughes Syndrome Support
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Sharp pain on the top left part of my head

I have had this sharp pain on the top left side of my head happen four days in a row now, and in the spot that it hurts it is super tender to the touch and lasts a while. The first day it happened it was from the top left of my head and down to the bavk of my head in a line, like the left side of my head following the line down my head that seperates the two cerebral hemispheres. The third day I woke up feeling sick to my stomach and extremely dizzy to where I couldn't even walk. What is this & why is it happening?

8 Replies

I would go and see your Doctor today this morning if possible.

Hope you soon feel better soon


Hi BriLeigh,

As you are now on a site for APS (Hughes Syndrome) do you believe you have got a symptom from this rare illness?

It could be a symptom of APS and I suggest you read on the charity website about it and you are welcome back. Tell us also where you live which could make it easier to help you find a medical Specialist of APS.

Best wishes from Kerstin in Stockholm


Hi, have you been to see a doctor about this? Also do you have a diagnosis of Hughes Syndrome/APS? MaryF


I agree with Mary & Kerstin.

Do you have a diagnosis of APS/Hughes Syndrome, as this is a forum for sufferers of this disease.



That's really weird as I have APS and its in my brain and I have some experience you have had thou not to the extreme of sickness and dizzy. I have sharp pains in parts of my head and sometimes top of head to right is sore to touch even slightly.


Hi Fra,

How does it work with the warfarin you have started? Do you feel better? Ha ve you been to Prof Hunt now?

What therapeutic INR- level are you on?

A lot of questions but i am interested to know how you go on.

Kerstin in Stockholm


Hi there Kerstin..bless you for your interest.My INR has now was 1.5 then 2.6 and now is 3.I am on 6mg.I don't feel a lot different thou my spasms are little less,my tripping and jerks in walking still same but my head is little bit setted.At first my head was terrible and horrible pains and movement inside when began warfarin thinking it was going to turn into stroke but that is now better.

No I haven't been to professor Hughes yet.My RA consultant is on leave and he wanted to start me on the warfarin before he went away to see how I went first.

How are you getting on Kerstin


Hi Fra,

I am fine as long as my Warfarin is between an INR of 3.2 - 3.8. I try to be at 3.8. I selftest every second day and that is the way when you are on warfarin; to test often, follow the INR so it stays within the therapeutic level.

I always talk of this because for me the Warfarin was a lifesafer. My bloodpressure is normal and steady, my Pulmonary Hypertension is also stable and I exercise without being breathless. My neurological issues are gone except for tinnitus and a bad memory for places and things.

I have Specialists who understands me.

Hope you can find a really knowledgable APS-doctor and have a little higher INR and selftest!

Thanks for asking about me!




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