Hello, I'm new here.

[niloreid2]

Hi, everyone. I'm new to the forum and want to say hi. I had my pulmonary emboli in Aug. 2018 and was formally diagnosed with APS about a year and a half later, though unofficially in Feb. 2019. I have a great hematologist, whom I like and trust, but I've only recently learned much about APS.

For example, from 2015-2017, I suffered daily migraines so bad I vomited all day long; I now wonder if those were part of my APS.

I wonder, too, about my poor memory, which I understand is another symptom of APS, though I haven't ever seen specification of long-term or short-term being the problem and I'd really like to know.

Is there somewhere you go and recommend for information?

Have any advice for someone newly aware that there's maybe more to this than just taking my blood thinner?

Thank you!

[rach1081985]

Hello and welcome...xx

[niloreid2 in reply to rach1081985]

Thank you!

[sweett]

Hi, I've only found information on APS support UK, my GP not great, She gets her info from there, it took for me too get diagnosed 3 blood clots hospitalised with migraines and numerous miscarriages for them too test me, since being on warfarin I've not had another clot, but migraines and brain fog still are still regular,

Hope you are OK and stay safe, 🌈

[niloreid2 in reply to sweett]

I'm so sorry to hear that you've had a number of miscarriages. I know that is heartbreaking. Sorry, too, that you're still suffering migraines and brain fog. I hope your GP gets better training or you luck into finding a specialist who can treat you better. Good luck!

[veganworld]

I had a PE and then went on to be diagnosed with APS. You can get a great book on Amazon called sticky blood explained by Kaye thackray. Its been vetted by Prof Hughes who discovered APS and he recommended it to me. I had memory problems and awful migraines as well. The treatment is blood thinners ie warfarin.

Hope that's helpful

Kaz x

[niloreid2 in reply to veganworld]

Thank you, Kaz. I appreciate the recommendation. I will check it out.

[GinaD]

I had migraines and what I was then calling " panic attacks" prior to my diagnosis. A very, very astute neurologist ordered MRI scans of my brain, and -- there it was: Mini stroke damage, which certainly indicated the migraines and panic attacks had actually been mini strokes. I Started warfarin, and a repeat scan done a year later showed that nearly all the stroke damage had gone.

[niloreid2 in reply to GinaD]

Wow, that must have been frightening, but how wonderful that the stroke damage has disappeared. It sounds as though you have a good medical team. Or at least that neurologist was good.

[GinaD]

Some great docs, some pretty bad docs.

[niloreid2 in reply to GinaD]

Isn't that so often how it goes--at least with the bad doctors. Well, I'm glad you've got some good ones.