Dear fellow sufferers, I hope you all are good and well.
I was diagnosed with both APS and Lupus almost two years ago, after my first bilateral pulmonaire embolism (PE) in May 2014. Following this first one I since then had two further PEs, last year in February and August 2015. It appear that the last one still did not disolve. Do any of you have a similar experiences and inability to disolve your blood clots?
After each of my PE I have gone back to work, but since end of last year it is increasingly difficult to cope even with 1/2 day at work. This is due to my fatigue, but worst of all are my frequent and horrific headaches. In the last few months I get them at least 3 times a month and they always last 3-4 days, always followed by vomiting, nausea,dizziness and even a diarrhoea. I am also getting more and more dizziness and black-outs. My headeaches does not seem to be related to level of my INR. Although, my INR never quite manage to get stable. Since diagnosed I have been trying so hard to fight and to keep my spirits high, but lately it is becoming harder and harder. Would some of you have some advice on how to deal with this horrific headeaches, and does it get better?
I live in Luxembourg and doctors here are not able to provide any enlightment, and like so many of you I too have a great deal of difficulties to get any or much information or for them to take my symptoms seriously.
I would appreciate if any of you can tell me how did APS effect your Life? Are you able to hold a régular full Time job?
I can't tell you what a priviledge is to be able to read all the posts on this site and to know that there are other fellow APS sufferers out there. Luxembourg is a tiny Country and I so far have not heard or met any other person with APS, and what is more, all the doctors that I have seen here, do not have any APS patient so far. I did see some specialist in France and the UK, but I regret to say that they did not Impress me or help me at all.
Thank you all in advance.
P.s. I am currently on : Asaflow 80mg, Plaquenil 400mg, Marcoumar 12mg and Innohep 14000 injections.