Sudden onset headaches

[Jackie1961]

I have primary APS but have never made a blood clot. I have survived bleeding out and multiple organ failure. I take Propranolol 20mg twice daily for migraine. Usually as long as I don’t miss a dose of propranolol, the migraines stay away. Sudden onset migraine hit yesterday. It felt like a worm burrowing through my brain on the top of my head on the right side. No other symptoms. No residual effects. Anyone else get this?

[lupus-support1 Administrator]

Sorry to read this but I would see your GP.

With good wishes,

Ros

[Lure2]

Hi Jackie,

You say you have primary APS. Are you also triple-positive with all three antibodies?

Who diagnosed you? You should have contact with a Specialist even if you have not got a

bloodclot. It is very common that we get microembolies and microclots and they are exstremely difficult to find but do harm all the same.

Very usual with a lot of neurological symptoms with APS as you probably know.

See your Specialist!

[Jackie1961 in reply to Lure2]

I was 1st diagnosed at National Jewish in Denver as triple positive. I was referred to a Dr Jill Schofield, also in Denver . Dr Schofield said something about positive for C reactive protein. Not sure what that’s about. Unfortunately Dr Schofield stopped taking insurance so she could focus on infusions for (can’t spell it “die nes tonia”) anyway, no one treats my APS since it doesn’t do anything….usually. Currently we’ve gone south for the winter which puts me at Yuma Proving Ground in Az. Home is along the Utah/Colorado state line. Considerable distance from a major city or specialist.

I do take a 81mg aspirin nightly to thin my blood, I do lots of walking and don’t sit long periods of time in a effort to keep blood moving. Don’t drink alcohol or soda pop, avoid rich and high fat foods, and foods with vitamin k which thickens blood.

The last headache was about 3 yrs ago, it was like a ice pick in the back of my head. That one was worse, and the pain put me on the floor. I did go to a little hospital emergency room where they did a CT scan but no blood clot or stroke was found. They said migraine and sent me home.

[Lure2]

I am from Sweden but I have been on this site for a long time and I have heard a lot of good things about Jill Schofield. She knows APS.

You should have a Specialist but it is your life.

[Jackie1961 in reply to Lure2]

Yes Dr Schofield is a wonderful doctor. I will have to address this issue. Thank you for your helpful input

[Bella_Bee]

It always blows my mind how mostly people outside of the UK are so incredibly well informed about their aps. I have no idea what secondary or primary aps is. And what three antibodies are we even talking about? I was told I had aps and now taking blood thinners in pregnancy. That's it. And I'm actually being looked after by a good hospital. It feels like there is a knowledge gap here that needs to be addressed. Please everyone continue sharing your knowledge. It's so helpful. X

[MaryF Administrator]

Hiya whether Christmas or not, you must get a medical opinion if this is a new symptom, I would consider ringing 111 to try and get some medical help, in the meantime it may settle down. MaryF